Music and Disability Studies
Blake Howe
Abstract: Disability studies is an interdisciplinary academic field that coalesces around a central argument: in addition to (or despite) its biological basis, disability is also socially and culturally mediated. During the past fifteen years, music scholars have engaged with this field, producing hundreds of publications. The range of topics has been diverse, demonstrating the pervasiveness of disability in musical practices throughout history and around the world. Many studies by musicologists and ethnomusicologists have focused on the musical experiences of disabled persons; the usual goal is to discern the role that disability has played in their careers, their reception histories, or their music-making. Other studies by musicologists and theorists have examined representations of disability in musical works: how disabled bodies are portrayed in dramatic music, or how rhythms, harmonies, textures, and forms might metaphorically disable the body of a composition. Finally, musicologists, theorists, and ethnomusicologists have used the insights of disability studies to scrutinize their own fields and professions, for example, by documenting social impediments that disabled students and scholars face. In each area, music scholars have allied themselves with some of the core tenets of disability studies, demonstrating not just that disability is socially and culturally mediated, but also this mediation can occur through music.
Keywords: disability studies, music theory, musicology, ethnomusicology, disability, representation, identity, embodimen
Blake Howe is Paula G. Manship Associate Professor of Musicology at Louisiana State University.
Howe, Blake. 2020. “Music and Disability Studies.” Music Research Annual 1: 1–29. ISSN 2563-7290
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Disability studies (DS) is an expansive, dynamic, and interdisciplinary academic field that coalesces around a central argument: in addition to (or despite) its biological basis, disability is also socially and culturally mediated. The field’s primary antagonist is the medical model of disability, which has framed disability as a pathology, a problem to be solved through intervention, quarantine, eugenics, or euthanasia: “cure or kill,” as some would have it (Garland-Thomson 2001, 355).
Combating the medical model, DS scholars propose various alternatives. An early and influential one is the social model of disability, which identifies problems not within the disabled body, but within the society that discriminates against it. A subtle but powerful terminological distinction exemplifies this insight. According to the social model, while an impairment is rooted in some biological reality, a disability is socially constructed and its meanings are therefore contingent upon a surrounding environment that may be accommodational or inhospitable (Davis 2002, 41; Goodley 2017, 9–13). An early use of this rhetorical gambit appeared in the Fundamental Principles of Disability (1976), a manifesto produced by the Union of the Physically Impaired Against Segregation (UPIAS), a British activist group:
Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society. To understand this, it is necessary to grasp the distinction between the physical impairment and the social situation, called “disability,” of people with such impairment. Thus we define impairment as lacking part of or all of a limb, or having a defective limb, organ, or mechanism of the body; and disability as the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have impairments and thus excludes them from participation in the mainstream of social activities. (Oliver 2009, 49)
Proponents of the social model identify barriers to inclusivity and seek their removal, turning disabling environments into enabling ones. For example, stairs disable wheelchair users, but ramps enable them. Blind persons are disabled by printed text but enabled by Braille. The social model’s approach to disability—a social problem with a social solution—is politically effective. Its theoretical framework forms the basis of major civil rights legislation, including the Americans with Disabilities Act (United States, 1990), the Disability Discrimination Act (United Kingdom, 1995), and the Convention on the Rights of Persons with Disabilities (United Nations, 2006). The rise of the modern Disability Rights Movement closely tracks that of DS: the Society for Disability Studies was formed in 1986, university programs and departments in disability were founded in the 1990s, and the Modern Language Association made things official in 2005, designating DS a “division of study” (Barker and Murray 2018, xiii–xxi).
While stairs serve as a familiar example of the physical barriers disabled persons confront, social attitudes toward disability such as stigma, stereotype, and prejudice also generate barriers. (A thought experiment: How many common words [e.g., crippled, handicapped], idioms [e.g., to fall on deaf ears], and insults [e.g., retarded, lame, dumb, pinhead, braindead] rely on negative attitudes toward disability for their rhetorical power?) The social model combats these barriers, too, which are every bit as socially constructed as an unsloped street curb. Erving Goffman’s Stigma: Notes on the Management of Spoiled Identity (1963) resonates throughout the DS literature for this reason (Brown 2013; Brune et al. 2014), such that Joseph N. Straus (2006b, 119) defines disability broadly as “any culturally stigmatized bodily difference” (emphasis added).
Disability has long been saddled by cultural associations with sinfulness, villainy, grotesqueness, freakery, and primitivism. (Another thought experiment: How many Disney villains are disabled? And how many heroes are able-bodied?) Other disability stereotypes emphasize pitifulness, weakness, and innocence (e.g., Tiny Tim in A Christmas Carol, Laura in The Glass Menagerie, Lennie in Of Mice and Men). Conversely, disability might signal prophetic abilities (the blind seer) or reveal the superhuman superpowers of a “supercrip.”1 An important project among cultural scholars of disability has been the excavation of the disabled body from this sordid history of negative representation or gross valorization, whether in the domains of literature (Kriegel 1987), film (Norden 1994), or performance, especially the freak show (Garland-Thomson 1996) and Jerry Lewis’s infamous Muscular Dystrophy Association Telethon (Longmore 2016).
The social model has its detractors. To DS scholar Michael Davidson, it is a “blunt instrument for describing a wide spectrum of disability experiences” (2016, 434).2 And to DS scholar Tobin Siebers, it risks a reductive approach to the “complex embodiments” of disabled persons, which cannot always be neatly sorted into impairments and disabilities (2008, 25–30). An alternative to the social model is the cultural model of disability, in which disability can be understood as a “source of embodied revelation” and “a site of phenomenological value that is not purely synonymous with the processes of social disablement” (Mitchell and Snyder 2006, 6 and 10). Unlike the social model, which focuses on external barriers to inclusivity, the cultural model foregrounds a disabled person’s subjective experiences of both body and culture (Adams, Reiss, and Serlin 2015, 9) and explores how “environment and bodily variation…inevitably impinge upon each other” (Mitchell and Snyder 2006, 6–7). What does it mean to be disabled, and how have disabled persons in different times and places understood their disabilities, understood themselves? Most recent scholarship in DS addresses these questions.
Unlike the social model, which assigns disability to socially constructed forces that lie outside an impaired body, the cultural model affirms disability as a valuable mode of identity: one that can be proudly “claimed” (Linton 1998), and one that can intersect with other identity categories like sexuality (McRuer 2006) or race and gender (Schalk 2018). There is an interesting rhetorical gambit at work here, too. While it is still common to use the term people with disabilities (person-first language), many who operate under the cultural model prefer disabled persons (identity-first language); the latter foregrounds disability, while the former accessorizes it. Writing about the lives and works of several disabled artists, DS scholar Rosemarie Garland-Thomson argues for this inseparability of person and body: “They were great artists not in spite of disability but because of disability” (2005, 524, emphasis added). Somewhat confusingly, this usage of the term disability conflates and recasts the social model’s distinction between impairment and disability. Here, disability may refer both to a physical condition and to its sociocultural reception, but with an important twist: the cultural model refocuses attention on the disabled person’s experience of both. In practice, the term disability often moves fluidly between these various models, between these various definitions, and between these various connotations. (We should expect no less from something so complex.)
Disability is everywhere. It is the world’s “largest physical minority” (Davis 2006, xv; 2015b) because of its extraordinary heterogeneity. The term has referred to—and is not limited by—sensory impairments (blindness, deafness), mobility impairments (paralysis, limp, tremor), speech impediments (stuttering, lisp, mutism), disfigurements (scarring, kyphosis), mental impairments (intellectual, behavioral, and emotional disorders), and chronic illness (HIV/AIDS, cancer). Although there are political advantages to subsuming these varied conditions under a single heading, and methodological advantages for studying them together, doing so also risks erasing their essential differences. Some of the conditions listed above are the subject of their own disciplinary fields, such as deaf studies and mad studies, and the extent to which their goals align with or diverge from those of DS is contested (Burch and Kafer 2010; Corker 2000; Smith 2017). The breadth of the term disability further expands when we consider that many disabilities are not congenital but result from some midlife change such as illness, trauma, injury, or aging. As Susan Wendell writes, “Most of us will live part of our lives with bodies that hurt, that move with difficulty or not at all, that deprive us of activities we once took for granted or that others take for granted, bodies that make daily life a physical struggle” (1989, 108). Or, as Siebers writes, “every human being may be considered temporarily able-bodied” (2008, 71). Thus, in its universality disability differs from other models of minority identity: anyone can become disabled, and everyone who lives long enough will.
Disability is everywhere, and it affects everyone, all the time. Like the categories of race and gender, the category of disability is a tool for organizing the world, for sorting, classifying, and ultimately privileging people according to their appearances and their abilities to function.3 Even those who consider themselves able-bodied—or, more likely, have not considered their able-bodiedness at all—are enmeshed in this system of ableism (a word akin to racism, used to describe anti-disability prejudice). An important part of DS involves the study of this precarious able-bodiedness and the ideology of normalcy that sustains it. Garland-Thomson coined the term normate to expose this privileged body to the same scrutiny that disabled bodies are often subjected to: it is the “veiled subject position of cultural self, the figure outlined by the array of deviant others whose marked bodies shore up the normate’s boundaries” (1997, 8). A more widely-adopted descriptor for the able body (even outside academia) is nondisabled. Wrung through its own double negation, the term serves as a reminder that the very notion of able-bodiedness is contingent upon our understanding of the disabled body.
Disability is everywhere, and that makes its invisibility alarming.4 Many disabilities are concealed or private, hidden from public consciousness and political discourse. Throughout their history, disabled persons have been subjected to regimes of marginalization and segregation: the asylum, “ugly laws,” forced sterilization, workplace discrimination, “special education” classrooms. As Paul K. Longmore writes, such restrictions can amount to “social death” (2003, 246). In academia, DS arrived relatively late to the identity studies party, long after parallel fields in race and gender studies had been securely established. It began to thrive as a discipline around the time that social construction, so central to the social model of disability, was falling out of fashion in other disciplines (Hacking 1999) and early intersectional scholarship fused the study of race, gender, sexuality, and class, while often omitting disability.5 In the lists of identity categories that accompany diversity and nondiscrimination statements in higher education, disability rarely appears. If it does, its position is last: “the caboose on the diversity train” (Davis 2015a, 61).
Perhaps this is why music scholars were slow to notice.
To be sure, disability has long been an important part of music scholarship and music historiography, to the extent that some disabilities have become canonical (Francesco Landini’s blindness, Ludwig van Beethoven’s deafness, Robert Schumann’s madness). But before the advent of DS as an academic discipline, most writers on music and disability were steeped in the medical model, focusing on pathology, disease, and affliction and undertaking the occasional graveyard exhumation for the purpose of posthumous diagnosis. With its catalogue of illnesses and disorders, physician Dieter Kerner’s frequently reprinted Krankheiten grosser Musiker (1963) is the classic of this genre. Its fifth edition bears a different—and revealing—title: Große Musiker: Leben und Leiden (Great musicians: Their lives and afflictions, 1998).
Other studies, also often written by practicing physicians, published in medical journals, and picked up indiscriminately by the popular press, focus with almost ghoulish fascination on causes of death: Wolfgang Amadeus Mozart, Franz Schubert, and Frédéric Chopin are some of the most notorious cold cases. Psychiatrists have played this game, too. A recurring target is Robert Schumann, diagnosed years after death with a bewildering number of anachronistic disorders from neurosyphilis to schizo-affective disorder to borderline personality disorder (Straus 2011, 34–36; Deaville 2016, 644–46). The fallacious methodology of assigning mental disorders of the present to composers of the past has been subjected to much critique.6
Some musicologists have nonetheless offered historically-sensitive and culturally-nuanced readings of disability, even before the flourishing of DS and without reference to its literature. In a survey of seventeenth- and eighteenth-century operatic mad scenes, Ellen Rosand briefly describes how representations of disability can implicitly critique musical norms and stylistic conventions: “The portrayal of madness…exploits and subverts the assumptions of stylistic decorum on which it builds. In so doing, it exposes those assumptions with glaring clarity” (1992, 265). Such language mirrors aspects of both the social model of disability (in its argument that social environments generate disability) and the cultural model of disability (in its argument that disability interrogates codes of normalcy and able-bodiedness). In her study of the mad scene in Gaetano Donizetti’s Lucia di Lammermoor, Mary Ann Smart explores a similar interplay of operatic convention and the subversive performance of madness: “Just as Lucia’s apparently free coloratura is constrained by harmony and phrase structure, her departures from conventional form are likewise controlled, or framed, by other musical parameters” (1992, 137). The opera ultimately confines Lucia in another way: by silencing and then killing her, a fate that many disabled characters share. Smart’s analysis anticipates later studies of disability narrative. For example, Lennard J. Davis observes that “plot is a form of pain control,” always opening wounds in order to heal them (2002, 100). Similarly, David T. Mitchell and Sharon L. Snyder developed a theory of narrative prosthesis that proposes that “disability has been used throughout history as a crutch upon which literary narratives lean for their representational power, disruptive potentiality, and analytical insight” (2000, 49).7 After all, what would Lucia be without its madness?
Music scholars began to engage with DS more directly in 2004 when music theorist Joseph N. Straus convened an evening panel titled “Disability Studies in Music” at the Annual Meetings of the American Musicological Society and Society for Music Theory in Seattle. As the abstract stated, “Although there has been an astonishing outpouring of humanistic work in Disability Studies in the past ten years, there has been virtually no echo in musicology or music theory. The goal of this Special Session is to begin a conversation among musicians about music-historical and music-theoretical issues related to disability” (Straus 2004). Two years later, publications began rolling out. Straus and musicologist Neil Lerner (another member of the evening panel) would co-edit a collection of sixteen essays: Sounding Off: Theorizing Disability in Music (2006). Published the same year in the Journal of the American Musicological Society, Straus’s “Normalizing the Abnormal: Disability in Music and Music Theory” (2006b) offered a broad introduction to DS followed by a sample of applications to the European classical repertoire; it is a foundational text and continues to be the most cited disability article in musicology and music theory. In his conclusion, Straus wrote, “Disability has been hiding in plain sight” (175). Not anymore.
Since then, the outpouring of scholarship has accelerated with hundreds of articles and essays, several monographs (Bakan 2018; Groemer 2016; Lubet 2011; McKay 2013; Rowden 2009; Spelman 2012; Straus 2011, 2018; Téllez Vargas 2018; Wallace 2018), The Oxford Handbook of Music and Disability Studies (Howe et al. 2016c), and an entry in Oxford Bibliographies Online (Howe and Lerner 2019). Since I completed initial work on this essay in spring 2019, the rate of publication only seems to have increased, as demonstrated by a special issue of the Journal of Interdisciplinary Voice Studies (Holmes and Eidsheim 2019); The Oxford Handbook on Music and the Body,with several chapters on disability (Kim and Gilman 2019); and new monographs by William Cheng (2020) and Katherine Meizel (2020). The American Musicological Society includes a Music and Disability Study Group; similarly, the Society for Music Theory includes a Music and Disability Interest Group and the Society for Ethnomusicology a Disability and Deaf Studies Interest Group.8 Graduate students and newly-minted PhDs fill many leadership roles in these organizations. This and the number of recent music dissertations incorporating DS (Accinno 2016; Hogan 2011; Holmes 2017b; Honisch 2016b; Howe 2010a; Maher 2016; Prescott 2011; Téllez Vargas 2016; VanderHamm 2017) testify to the popularity of the field among younger scholars and suggest its potential for growth.
The range of topics has been diverse, demonstrating the pervasiveness of disability in musical practices throughout history and around the world, from medieval chansons that describe the effects of humoral imbalance (Singer 2016) to twentieth-century expressionist operas that use disability to symbolize modern alienation (Lee 2016), and from the Marshall Islands where women sing through traumatized voices about their exposure to radiation from nuclear testing (Schwartz 2016) to Finland where deaf rapper Signmark composed and performs a song about the murder of a deaf woman in New Zealand (Jones 2016, 64–66). Sorted by their topics and by their disciplinary methodologies, most scholarship falls into one of three categories:
- First, scholars have focused on the musical experiences of disabled persons and attempt to discern the role that disability played or plays in their careers, their reception histories, or their music-making. Subjects have included performers, for example, Connie Boswell (Stras 2009), Django Reinhardt (Lubet 2011, 45–51), and Joni Mitchell (Jones 2019); composers such as Robert Schumann (Deaville 2016) or Darius Milhaud (Maher 2016, 338–50); and communities of disabled persons, such as goze (Japanese blind musicians, discussed below; Groemer 2016), song signers (Maler 2016; Cripps et al. 2017; Begue and Cripps 2018), blind blues singers (Rowden 2009), or mobility-impaired dancers in New Orleans second lines (Santoro 2016). These topics address concerns that have traditionally been the purview of musicology and ethnomusicology: they focus on musical experiences, traditions, identities, and sociocultural contexts. Some of this scholarship has been produced by scholars outside of music, including DS scholars, deaf studies scholars, cultural anthropologists, bioethicists, and historians.
- Second, scholars have examined representations of disability in musical works, exploring how disabled bodies are costumed, staged, and musically accompanied in opera (Jensen-Moulton 2011a), musical theater (Knapp 2016), television (Cheng 2017), and film (Iverson 2006; Lerner 2006, 2016); how rhythms, harmonies, textures, and forms might metaphorically “disable” the body of a musical work, programmatic (Rodgers 2006) or otherwise (Grave 2008); and how disability is endemic to the development and reception of certain musical styles, periods, and genres, including modernism (Straus 2018), serialism (Straus 2016), jazz (Russell 2011), punk rock (McKay 2016), and late style (Straus 2008). These topics address concerns that have traditionally been the purview of musicology and music theory: the focus is on how musical works operate through the lens of disability, that is, how they may inscribe, narrate, and represent disabled bodies.
- Finally, music scholars have used DS to scrutinize their own disciplines and professions, for example, by developing new protocols for universal design in music pedagogy (Gillespie 2018; Dell’Antonio 2019); by documenting impediments faced by disabled music scholars (Bassler 2009) and advocating for conference accessibility (Bassler 2014); and by evaluating methodological issues, such as the relationship between scholar and subject (Dell’Antonio and Grace 2016) or the tendency of music analysis to normalize difference (Straus 2018, 155–84). This disciplinary critique is one of the most important yet under-heralded contributions of the subfield to the broader communities of music scholars, including those in musicology, theory, and ethnomusicology.
In each of these three domains, music scholars have allied themselves with the core tenets of DS, demonstrating not just that disability is socially and culturally mediated but also that this mediation can occur through music. The following literature review will consider some of the ways they have done so. I focus on anglophone scholarship (more on that later) within the fields of musicology, music theory, and, to a lesser extent, ethnomusicology (more on that later, too). I have grouped different works together by the themes and arguments they develop, rather than by their ostensible subject matter, a strategy that reveals some surprising points of convergence and instructive points of divergence. My goal is not to argue with or nitpick these works, but rather to facilitate an imaginary dialogue between them. I conclude by briefly addressing some important lacunae that scholars (including myself) might consider as we continue to contribute to the field.
Disabled Musicians
“Difference, not deficit”: so goes a familiar aphorism, commonly found in writings about multiculturalism and disability rights. Like the medical model, the deficit model of disability conceptualizes the disabled body around what it cannot do, that is, its “perceived deficiencies, dysfunctions, problems, needs, and limitations” (Dinishak 2016). Under this model, a deaf person cannot hear, a blind person cannot see, and an autistic person cannot feel. By replacing “deficit” with “difference,” scholars and activists resituate disability within a continuum of diverse human morphology. In DS, authors often use bodily difference as a synonym for disability, and substitute neurodiversity for mental disorders. Within this framework, Garland-Thomson (echoing environmentalism’s defense of biodiversity) makes a powerful case for “conserving” disability as a “potentially generative resource rather than unequivocally restrictive liability” that offers “cultural and material contributions” to the world (2012, 341).
Supporting her argument, Garland-Thomson turns to music, citing examples of what Straus called disablist hearing: “the ways that people whose bodily, psychological, or cognitive abilities are different from the prevailing norm might make sense of music” (2011, 150). According to Straus, a deaf person might “use senses other than the auditory to make sense of what they hear” (“they see and feel music”) (167). A blind person’s music-making is usually “not mediated by notation” and may be “more sensitive to aspects of music that are not conveyed by traditional musical notation” (171–72). An autistic person may be drawn to “the discrete musical event in all of its concrete detail” and may be skilled at forming “associative networks (often involving private or idiosyncratic meanings)” (165). For Garland-Thomson, these alternative modes of listening offer a defense of disability’s intrinsic worth, its legitimacy, its indispensability: “experiencing music through the variant body can be an epistemic resource that expands our understanding of music itself in fresh ways” (347). Disablist hearing is not defective hearing. It is different, valuably so.
Many recent studies of disabled composers and performers follow this model and seek other “generative resources” from their music-making.9 For example, in a study of Paul Wittgenstein (2010b), I documented various obstacles and prejudices that the pianist faced as both a performer and a commissioner of one-hand piano music. Several contemporary reviews described Wittgenstein’s disability (his amputated right arm) as a defect that he heroically and transcendentally overcame through virtuosic musical performances. Such flowery language reflects one of the more pernicious tropes of the deficit model: if disability is deficiency, then any form of success or accomplishment must involve its erasure.10 Further exemplifying the deficit model, an overzealous arranger even added a right hand to some of Wittgenstein’s commissions in a misguided attempt to “strengthen” and “fill in” the supposedly deficient music (Howe 2010b, 165).
Working against the deficit model of disability is Paul Wittgenstein’s pianism itself, which adopts creative fingerings and introduces innovative techniques, all valuable differences. Also commissioned by Wittgenstein, Richard Strauss’s Parergon zur Sinfonia Domestica (Parergon on the domestic symphony, 1925) is singled out for praise: “Curling, twisting, and trilling with decorative playfulness, its piano part seems to evoke a new mode of keyboard performance, one different from any traditional two-hand model” (Howe 2010b, 177).11 Musicologist Matthew J. Jones (2019) would probably call this mode of performance an example of “crip virtuosity,” a term he uses to describe “forms of exceptional music-making that are rooted in disability” that “would not exist as such without particular disabling conditions” (28). Jones applies the term to Joni Mitchell’s unique mode of guitar performance, which stems from her experiences with post-polio syndrome (PPS); she uses “many alternate tunings,” “unorthodox chord voicings,” and “an idiosyncratic right-hand technique that incorporates a plectrum, detailed fingerpicking, rhythmic strumming, pizzicato, and other effects” (21). Notably, as Jones suggests, nondisabled musicians almost always have the ability to adopt various crip virtuosities. (A two-handed pianist, for example, can play with just one hand.) But, limited by the norms and traditions of able-bodiedness, few ever consider doing so, at least not until disabled musicians first pave the way.
In a much different study that arrives at related conclusions, musicologist Jessica A. Holmes (2016) analyzes a work of performance art created by Christine Sun Kim (who is deaf) for nine performers (also deaf); its title is Face Opera II (2013), that is, an opera for faces rather than voices. The terms “deaf music,” “deaf opera,” or “deaf singing” might at first seem paradoxical; if music signifies through sound, then the inability to hear would be the ultimate limitation, a deficit without redeeming difference. But as Holmes’s analysis shows, Kim’s choreographed facial expressions and hand and body movements are expressive utterances that blur the lines between singing and signing, music and silence, ability and disability. Eschewing the deficit model of disability, Face Opera II instead exemplifies Garland-Thomson’s notion of a generative resource and, according to Holmes, shows how deafness may “question the very sonic basis for music,” “unsettle the precondition of vocalized sound in sung vocal production,” and “engender new and unexpected types of singing” (542). Neither Wittgenstein’s one-handedness, nor Mitchell’s PPS, nor Kim’s deafness produced defective, deficient music; on the contrary, their disabilities stimulated the flourishing of new, different, and intrinsically valuable modes of music-making.
Other scholars have replaced deficit with difference by documenting the rich musical practices that take place within various disability communities.12 In her study of the musical experiences of persons with intellectual disabilities, philosopher Licia Carlson pits the medical model of disability against the cultural model: “Individuals whose capacities (and incapacities) could be easily objectified and reducible to a low IQ score or a clinical constellation of deficits, emerge as full and flourishing subjects living musical lives” (2013, 89). As examples, Carlson describes how persons with Williams Syndrome (an intellectual disability) “almost universally seem to share a deep love of listening and performing music” (89); how an intellectually-disabled woman incapable of verbal communication forged relationships with her caregivers by listening to music, thereby challenging “the assumption that because of her disability she is somehow incapable of experiencing certain forms of joy and that she is bereft of the possibility of communication” (91); and how the music of Hikari Ōe, a developmentally-disabled composer, has “allowed others to access his experiences, and to cultivate a relationship with him in a way that traditional forms of linguistic communication may have prevented” (92). In each case, Carlson counteracts hoary stereotypes about the static, simplistic experiences of intellectually-disabled persons, disproving any claim that they are “incapable of living meaningful lives” (85). Notably, Carlson’s study does identify a deficit: the inability of many nondisabled persons to understand and empathize with the intellectually disabled. Music, as a nonlinguistic mode of communication that forges social bonds, offers a way to “overcome these barriers to knowledge” (88).
Across his various studies of music and autism, ethnomusicologist Michael B. Bakan (2014, 2015, 2016a, 2016b, 2018) has arrived at similar conclusions. He is one of the guiding members of ARTISM (Autism: Responding Together in Sound), a nonprofessional ensemble of neurodiverse performers, including autistic children and their parents. Bakan recounts that in an early rehearsal, one autistic participant in the ensemble was stimming, a term shortened from “self-stimulatory behavior” (in this case, repetitive hand and leg movements). In the medical literature, stimming (or stereotypy) “is essentially cast as symptomatic, as a problem to be treated therapeutically with the intention that it be eliminated, or at least diminished” (Bakan 2014, 145). Disheartened by her refusal to play an instrument, Bakan’s first reaction was concern. But after speaking with the participant and learning “that she was really enjoying the sessions, but that she wanted to just listen and respond to the music ‘in her own way’” (147), Bakan remediated his own views. He overcame his own limitations, his own preconceptions, his own “barriers to knowledge,” as Carlson might say. A symptom within medical and deficit models of disability, stimming instead can become “a powerful expression of musical and social engagement” (150). Like the musical experiences of intellectually-disabled persons, the musical experiences of autistic persons dispel many myths about the limitations or deficiencies of disability and show that human flourishing can occur in a multitude of ways (Carlson 2016).
Various musical traditions have also supported social networks and employment opportunities for disabled persons, allowing for their flourishing within the realm of music, even as they might endure stigma and marginalization outside it. Disability scholars Maria Flamich and Rita Hoffmann (2018) investigate the history of music-making in Hungarian schools for blind persons and the strong choral tradition they helped foster, while musicologist Michael Accinno (2016) shows how music pedagogy played an important role in the establishment of blind schools in the nineteenth-century United States, partially owing to the belief that music was a viable career path for their graduates. Indeed, close cultural associations between music and blindness have spawned several familiar archetypes: the blind organist, the blind blues singer, the blind piano tuner, or the blind bard. The Japanese tradition of goze was another example: blind women in seventeenth- to twentieth-century Japan could join a goze guild or household where they would meet other blind women and receive rigorous musical training, which they hoped would lead to a musical career. As ethnomusicologist Gerald Groemer (2016) argues, by becoming a goze, blind women “were no longer required to pin all their hopes on family support, charitable contributions, or ‘cures’ offered by shamans or doctors” (35–36). Instead, the concerns of the women shifted to “cultivating artistic abilities, pursuing opportunities for performance, strengthening…individual or collective socioeconomic position, and fostering mutual support in daily life” (36). Music, in these instances, can be a tool for disabled persons to escape the deficit model’s clutches and for showcasing their skills, talents, and abilities. It can also be a platform for resistance and protest. As ethnomusicologist Brian Hogan (2016) has shown, some blind Birifor xylophonists in northwest Ghana have composed songs that explicitly address negative stereotypes about disability. One song, by Maal Yichiir, includes a powerful retort: “I am playing./ I am playing to tell people,/ Even though they make fun of the blind,/ We can still play” (118). Under the deficit model, disability is defined by what someone cannot do; disabled musicians, however, counter such attitudes by showing audiences what they can do.
But musical experiences are not always so enabling or liberating. Not all stories of music and disability end hopefully. Indeed, music can cause injury and pain, as the field of performance arts medicine has amply demonstrated. “A Symphony of Maladies” is the title of one particularly sobering catalogue of music-performance disorders: overuse syndrome, performance anxiety, laryngopharyngeal disorders (from playing high-pressure wind instruments), jaw problems and teeth grinding (from bending the neck to play violin or viola), dermatitis (from allergies to metallic instruments)—the list goes on (Bache and Edenborough 2008). At sufficiently loud volumes, music can injure its listeners and performers, causing permanent hearing loss (Holmes 2017a, 204–09). Medical Problems of Performing Artists (the quarterly journal of the Performing Arts Medicine Association) produces an abundance of scholarship on these and other topics, documenting not just how disabled musicians might find appropriate accommodations for performance, but also how the act of performance itself can generate impairments. Performance injuries are often blamed on the performer, that is, on their improper technique, on their “overuse.” But what if most bodies are simply not built for the fine, repetitive motions that music performance demands? What if, as music and disability scholar Alex Lubet speculated, playing music is fundamentally “hazardous to our health” (2011, 22)?
Music industries can punish bodies, too; the operatic system that produced the castrati comes immediately to mind (Law 2016). Drawing on a more contemporary example, George McKay (2018) studied the life and career of Karen Carpenter, the rock singer and drummer, who died onstage in 1983 due to complications from anorexia. After examining body image expectations within the popular music industry, the exhausting work schedule required of its performers, and Carpenter’s artistic marginalization by her male managers and mentors, McKay concludes with a damning assessment: the popular music industry “is capable of producing and reproducing disastrous lives for its stars, or at least of demanding of their bodies something extraordinary and then being incapable of or uninterested in helping them negotiate let alone recover from their willed transformation” (18).13
A similar assessment has been made of classical music institutions. A professional hornist, Sarah Schmalenberger (2008) describes her painful attempts to return to her instrument after recovering from breast cancer: “I was unable to pull in a good, full breath to play my horn….I began to dread playing the horn, but not playing caused deep grief” (48–49). Schmalenberger observes that her situation is not unique, that many performers experience pain and discomfort, but such vulnerabilities are usually suppressed by an “unspoken musicians’ code of honor,” a sense within classical music institutions that “musicians often feel compelled to live up to an internalized ethos of resilience that rewards those who will perform/produce at any cost” (49).
Schmalenberger ends her essay by calling for more extensive workplace protections for performers, akin to what professional athletes receive when they are taken off the field after an injury. Her plea invokes the social model of disability (i.e., by withholding beneficial accommodations, the music industry disables its performers), nonetheless, it also acknowledges the very real pain and despair of injured performers, the very real financial and emotional consequences they face, and the very real possibility that their injuries cannot be fixed.
It is difficult to speak of the challenges of living with a painful impairment without demeaning or disparaging disability identity. Yet, not doing so runs another significant risk: that of glorification and aggrandizement. Although most disability conditions are not painful, degenerative, or fatal, some are, and an inclusive approach to the study of disability must acknowledge these experiences. These goals align with the cultural model of disability, which seeks to understand each subjective experience of disability on its own terms rather than on those of a master narrative, overarching theory, or political ideology. Grappling with these issues, William Cheng (2016a) writes frankly of his experiences with chronic neuropathy and the painful symptoms that made playing piano impossible, and with the failure of music to offer relief or assuage his despondency. There are no easy answers. “The more I’ve felt pressured to rekindle my love for music, the more dejected I’ve become in failing to do so,” he writes. “Not everyone gets to be a hero. Some people barely manage to hold on.”
In a provocative and influential essay, musicologist Laurie Stras (2006) examines the ethics and aesthetics of another type of performance injury—vocal trauma—and explores some ways in which the “disrupted voice”may signify:
[It] conveys meaning even before it conveys language; in Western cultures we hear disruption as pathology, in both the current and obsolete meanings of the word: it is indicative of passions, suffering, disease, malfunction, abnormality. We hear it, too, as the result of labor—the physical trace of an agent working on the body, a measure of the body’s cumulative experience of extrinsic (environmental) or intrinsic (entropic) forces. Time and trauma take their toll on the voice, and although we are left to imagine, discover, or construct a context for the disruption—is this person a heavy smoker? Has that person been shouting? Is she going through the hormonal changes of aging? Is he gripped by psychic terror?—we are certain there is more being communicated by the voice than the words it speaks. (173)
Disabled persons are often asked about the origin of their impairments: What happened? What is the matter? What caused this (and could it happen to me)?14 Disabled performers face these speculations, too, and their performances can result in a complex negotiation between concealment and disclosure, visibility and invisibility, audibility and inaudibility (Bahl 2015; Honisch 2009; Howe 2016a; Straus 2011, 125–49). Vocal trauma is an invisible disability, but its symptoms are revealed audibly through speech and through singing, resulting in a kind of dual performance of both music and disability (Straus 2011, 126). In a powerful study of performers of radiation songs in the Marshall Islands, ethnomusicologist Jessica A. Schwartz (2016) describes the vocal trauma caused by years of nuclear testing and explores how singing through such trauma brings “the inner working of radiation…to the fore” (477) and how it contributes “to mitigating nuclear damages by exposing nuclear damages” (478). Through such empowering vocal performances, the invisible is made audible, and past trauma is brought to bear on the present.
In classical music performance, the gruff, guttural sounds of vocal trauma are usually undesirable, and the backstories they evoke (of pain, injury, frailty) can be distracting. Audiences and critics sometimes practice a form of musical euthanasia on their injured or aging performers: Is a singer past their prime? Should they quit while they are ahead? Ideals of grace and elegance prevail, and that means performers must conceal any sign of strain or stress, any sign of physical—that is, human—labor. But other genres, like rock, blues, and jazz, embrace raspy timbres, to the extent that some performers adopt the traumatized voice as a simulated affect. It conveys “authority, authenticity, and integrity” (Stras 2006, 174); the performer becomes “a person whose own flesh speaks its history wordlessly through the voice itself” (176). Stigmatized in one mode of performance, the timbres of vocal trauma can be valorized in another. One genre’s deficit is the other’s difference.
Disability in Musical Works
“Nothing about us without us!” So goes a well-known rallying cry, popular especially within the Disability Rights Movement (Charlton 1998, 3–17). As disability historian Fred Pelka (2012) writes, the chant counters the prevailing paternalism that disabled persons have long endured:
[Disabled persons] have generally been seen as objects of scorn or pity, “cases” to be cured or “managed,” problems to be confronted or ignored. The most basic decisions about their lives—decisions about where they should live, if and how they should be educated, if and where they should work, and whether they could or should marry and raise families—have most often been made entirely without their input. Advocates have had to raise their voices, often in frustration and anger, sometimes in desperation, to a society that assumes they have no voice at all. (ix)
“Nothing about us without us” applies not just to the sociopolitical marginalization of disabled persons but also to the representational systems that portray them. Calling the slogan a “cornerstone of disability politics,” DS scholar Petra Kuppers (2012) writes that disabled persons “struggle to find voice and accurate representation, to escape the heavy burden of stereotypes and medical imagery.” In literature, theater, and film, stories about disabled persons are often told from the perspective of their nondisabled creators, who infuse their depictions with ableist assumptions and fears. Within these works, disabled characters typically serve their able-bodied protagonists as foils. They are the villains, sidekicks, wise elders, or comic relief, and their purpose is to evoke revulsion, terror, pity, or ridicule (Longmore 2003, 131–46). Scholars in DS have reexamined these representational systems from a disablist perspective, exposing the “ideology of ability” that supports and sustains them and recovering the disabled experiences that they tarnish and suppress.15 “Nothing about us without us” moves disabled bodies from the object position into the subject position, prioritizing political self-determination and artistic self-representation.
Lying at this intersection of politics and art, the practice of hiring nondisabled actors to portray disabled characters has sparked much controversy; indeed, the debate has recently gone mainstream, with many articles and opinion pieces in the popular press (Andrews 2019; Bitran 2019; Paulson 2019; Rubin 2017; Ryan 2015; Sun 2016; Woodburn and Ruderman 2016). DS scholars and activists have derisively called this practice “cripface,” “cripping up,” “disability drag,” and “disabled mimicry.”16 The criticisms are twofold: first, hiring nondisabled actors deprives disabled actors of already scarce employment opportunities; and second, nondisabled actors, writers, and directors often represent the disabled experience falsely, perpetuating negative stereotypes. Although most discussions of disabled mimicry focus on film, the practice is also pervasive in genres of musical theater, where the abundance of disabled roles has most commonly been filled by nondisabled singers who simulate disability with the help of costumes, props, makeup, affect, and gesture. Of course, disabled mimicry is not inherently unethical. With empathy, and in consultation with members of the disability community, nondisabled actors have embodied disabled characters persuasively and humanely, just as disabled actors have used their experiences and perspectives to shed new light on traditionally nondisabled roles.17 Likewise, not all efforts at inclusive casting are inherently productive. For example, a production of Giuseppe Verdi’s Rigoletto starring a baritone with kyphosis (spinal curvature) might legitimate the opera’s negative representations of disfigurement. Maybe some disabled characters do not deserve an authentic embodiment, lest such portrayals legitimize pernicious stereotypes.
Among the most grotesque historical examples is the character of Jim Crow as performed by T. D. Rice in nineteenth-century American minstrel shows. Rice’s use of blackface and racial caricature is well known, but, as musicologist Sean Murray (2016) has shown, the performance also engaged in disabled mimicry: Rice adopted a “stilted dance for his ‘Jim Crow’ act by putting on a pathetic limp and crooking his shoulder while he sang and danced” (357). The jagged performance style trafficked in racism and ableism, while simultaneously showcasing Rice’s prodigious skills as an actor and dancer. This is an ironic facet of disabled mimicry, still relevant today: nondisabled actors simulate disability to prove their acting abilities. (Yet another thought experiment: How many Oscars have gone to nondisabled actors for portraying disabled characters?) Even sympathetic, well-intentioned portrayals of disability can prove problematic, as DS scholar Sally Chivers (2003) shows in her assessment of a contemporary production of Carlisle Floyd’s opera Of Mice and Men. The production obscured Lennie’s intellectual disability, and the nondisabled singer who played him adopted gestures and facial expressions that came across as childlike rather than disabled. Although this representational choice avoided some of the uglier tendencies of disabled mimicry, it also reduced Lennie to a kind of disembodied symbol: “To me,” Chivers writes, “this demonstrates the powerful failure when a metaphor [i.e., Lennie’s disability] strains to be merely figurative and lived experience intervenes.”
Musicologist Stephanie Jensen-Moulton (2011a) evaluates a recent production of George Gershwin’s opera Porgy and Bess that took the opposite approach. By replacing Porgy’s goat cart with a cane, this staging foregrounded Porgy’s disability: the nondisabled actor mimicked many of the visible signs of mobility impairment—“struggling, dragging, limping, falling”—such that his disabled gait became central to the opera’s theme. The results are complicated, to say the least, subverting some misconceptions about disability while affirming others. As Jensen-Moulton writes, the production “might be viewed as an allegory for the way disability tends to manifest itself on the American operatic stage: as a contradictory bundle of stereotypes, good intentions, and intensely studied performances by able-bodied singers.”
Opera and musical theater abound in these and other “representational conundrums,” DS scholar Carrie Sandahl’s term for the “challenging, puzzling, or paradoxical issues that are unique to or complicated by disability’s presence,” especially on the theatrical stage (2018, 130–31). Both genres tend to embrace spectacle and excess: they are big and loud and lavish, with little room for the subtle, nuanced, and unexaggerated representation of bodily difference. On these grand stages, disability is appropriated within codes of representational shorthand, which quickly and broadly communicate information about a character without the aid of extraneous narration. For example, characters with disfigured bodies, especially those with dwarfism or hunched backs, are usually predisposed to villainy and violence: Chernamor (Ruslan i Lyudmila), Alberich (Der Ring des Nibelungen), Rigoletto (Rigoletto), Tonio (Pagliacci), and the Phantom (The Phantom of the Opera), to name a few. Likewise, a number of operatic characters perform their naivety, feeblemindedness, or low social status by stuttering: Demo (Il Giasone), Don Curzio (Le nozze di Figaro), Cochenille (Les contes d’Hoffmann), Vašek (Prodaná nevěsta), Dr. Blind (Die Fledermaus), and Billy Budd (Billy Budd), to name some more.18
Other representations are completely reductive, “engulfing” characters in a “single stigmatic trait” (Garland-Thomson 1997, 11). In Richard Strauss’s opera Die Frau ohne Schatten, Barak’s three brothers are, simply, the One-Eyed Man (Der Einäugige), the One-Armed Man (Der Einarmige), and the Hunchback (Der Bucklige) (Lee 2016, 668–72). These examples—and many more like them (Howe 2018)—contribute to one of Sandahl’s most important representational conundrums: the “stark difference between the power of disability in narrative and the all-too-pervasive disenfranchisement of the disabled people they represent” (Sandahl 2018, 135).
Composers face other conundrums when seeking musical representations of disability. In preparing Of Mice and Men, Floyd found himself flummoxed by Lenny’s intellectual disability: “To be perfectly honest, the prospect of writing music to characterize an idiot in a major role in a full-length opera stunned my imagination. What on earth would one do musically with almost total mental and emotional vacuity?” (Chivers 2003). Floyd’s failure of imagination is twofold. First, he seems to have been unable to conceive of intellectual disability as a mode of “human flourishing” (Carlson 2013, 2016), describing it instead solely in terms of deficit. Second, he seems to have been unable to imagine a musical style “disabled” enough to fit this stereotype, as if music without reason and without expressivity (“mental and emotional vacuity”) ceases to be, cannot be, music. In this short, regrettable quotation, Floyd merges human disqualification with aesthetic disqualification, giving credence to Siebers’s contention that the two are closely intertwined. “Disqualification finds support in the way that bodies appear,” he writes. “Disqualification is justified through the accusation of mental or physical inferiority based on aesthetic principles” (2010, 24). Siebers is primarily concerned with the visual aesthetics of appearance, but the sonic aesthetics of music can be understood to operate in similar ways. Disqualification, we might say, finds support in the way that bodies are expected to sound.
Just as medical and deficit models place disabled bodies outside the norms of human morphology and on the fringes of a bell-shaped curve, musical representations of disabled bodies often transgress norms of style and convention. In a colloquy largely stimulated by Siebers’s argument, Jensen-Moulton and I write:
Disability has historically been conceived as a fragmentation or corruption of an able-bodied norm, as a deviation from some conformational standard.…Cultural conventions associated with music (and with Western concert music in particular) can be harsh and relentless enforcers of these conformational standards, punishing divergence while favoring uniformity in ways that may profitably be understood to mirror the social oppression of disabled bodies and minds. In musical compositions, especially those that specifically reference disability, this social hierarchy deems some notes consonant and others dissonant; some rhythms as falling on the beat and others off it; some forms conformational and others deformational. (2016, 526)
For example, in her analysis of William Walton’s score for the film Richard III, musicologist Kendra Preston Leonard (2016) observes that the disabled king’s music incorporates chromatic melodies, syncopated rhythms, unpredictable harmonies, peculiar timbres, and extended instrumental techniques, all in contrast to the diatonic pastoral mode, march-like rhythms, goal-directed harmonies, and standard orchestration associated with nondisabled characters. Richard III thus falls “outside of the normate” (854) physically, mentally, and musically. Musical representations of disability often rely on these points of contrast, pitting what is ostensibly normal, conventional, and expected (like the able body) against what is perceived as abnormal, transgressive, and unique (like the disabled body).
To take another example, music theorist Stephen Rodgers, in his study of mental illness in Hector Berlioz’s Symphonie fantastique, finds the first movement’s sonata form “contorted in such a way as to become maddeningly reiterative,” thus suggesting “the physical and mental sensations symptomatic of monomania: confusion, restlessness, internal conflict, and escalating obsession” (2006, 246). Sonata form is another convention, another “conformational standard” (Howe and Jensen-Moulton 2016, 526). Musical works that follow its parameters support the listener’s expectations, and those that diverge from them (or contort, deform, disfigure them) do not, and thus can be perceived as abnormal.19 By co-opting a medical term (idée fixe), Berliozlinks psychiatric disorder to musical disorder; his protagonist behaves atypically and so too does his sonata form. Other representations of mental illness present order alongside disorder such that both elements unfold simultaneously within a single musical texture (Howe 2016b). In songs like Franz Schubert’s “Die liebe Farbe,” Peter Cornelius’s “Ein Ton,” and Ralph Vaughan Williams’s “In Dreams,” a fixed, repeated note disturbs the prevailing harmony; this musical stratification mirrors nineteenth-century diagnoses of obsession, which describe a festering obsessive thought within an otherwise healthy mind. As in the examples from Walton and Berlioz, the stark contrast between convention and aberration generates an expressive friction, a provocation that disablist hermeneutics seeks to resolve. As I have written earlier, “Music is mobile: melodies move (they ascend, they descend), harmonies progress (they pivot, they resolve), and rhythms proceed forward in time (they follow beats 1, 2, 3, and so on). Why, then, do some notes get stuck?” (2016b, 219).
Scholars of music and disability have asked similar questions of other musical works, even those that do not programmatically or textually invoke disability. Sometimes reception history serves as a guide, as in the analytical tendency to treat Beethoven’s codas as prostheses, which allegedly compensate for deficiencies within the main “bodies” of his works (Quaglia 2016), or as in the interpretive tradition that associates Igor Stravinsky’s music with nepodvizhnost’ (immobility), drobnost (splinteredness), and uproshchéniye (simplification), all words with clear disability analogues (Straus 2018, 69–87). Other scholars derive their analytical methodology from the field of musical embodiment (Brower 1997–98, 2000; Cox 2016; Gur 2008; Larson 2012; Saslaw 1996; Zbikowski 1997–98), which has shown how “music creates meaning by encoding bodily experience” (Straus 2006b, 121). For example, Straus (2006a) finds embodied meaning in inversionally symmetrical chords (which relate to the physical experience of balance) and asymmetrical chords (which relate to imbalance). In their atonal music, Arnold Schoenberg and Anton Webern treat symmetrical chords as normative, just as the medical model treats the symmetrical body (with two eyes, two arms, and two legs) as normative; asymmetrical chords (and by extension, the non-normative, disfigured, asymmetrical body) provide contrast. Likewise, musicologist Floyd Grave uses a constellation of embodied metaphors to describe how Haydn’s instrumental music often traverses a path from “affliction” to “recovery”: a motive seems to be “stammering,” a rhythm is “out of balance,” a melody has the quality of “inebriated disorder,” and a minuet exists in a “state of anxiety and impaired mobility” (2016, 566–67).
The language is loaded, and that is precisely the point: Grave is on a “search for words, phrases, and images by which to sharpen our focus on palpable musical relationships—metaphors that can help breathe life into our interaction with the music as listeners and performers” (564). Traditional music theories are already steeped in the language of embodied metaphor. Indeed, such metaphors are so pervasive that it is easy to forget their fancifulness: notes ascend, chords pivot, rhythms flow. Grave uses the language of disability to explore alternative metaphorical networks as a way of coaxing meaning from a musical work. Haydn’s music is charged; it evokes something, and because embodied cognition is fundamental to our experience of music, the language of disability can be a valuable interpretive tool.
But to what end? Alex Lubet describes his frustration with scholarship that uses “disability as a metaphor with which to describe…Western art music,” finding the goals of such research “at best marginal to the emancipatory mission of DS” (2011, 158). Likewise, Alejandro Alberto Téllez Vargas criticizes “the sense of distance that disability research in musicology has from the subjective reality that disabled musicians live on a daily basis” (2018, 10). He argues that scholars who work on music and disability should focus on “barrier removal and political activism” instead of generating “parasitic” scholarship that “ignores the interest and concerns of the disability community” (171–72).
Indeed, without consideration and care, studies of disability representation carry significant ethical risks: the risk of appropriation, where an analysis exploits the potency of disability as a hermeneutical tool; the risk of perpetuation, where the analysis simply restates the representation, albeit in more respectable, technical language; the risk of abstraction, where the analysis broadly conceptualizes disability outside the lived experiences of disabled persons; or the risk of irrelevance, where the analysis of historical works remains detached from present-day concerns.
When undertaken sensitively, however, studies of disability representation can show how certain musical works can participate in the social construction of disability. These studies can help to dismantle ableism by showing how ableism operates. They help uncover a disabled person’s experience of oppression by examining the nature of that oppression. Moreover, they reveal the frustrating disjunction between the vital, indispensable, even cherished role of disability in artistic works—“good art incorporates disability,” writes Siebers (2010, 4)—and its marginalized, stigmatized status in real life. “Nothing about us without us,” indeed.
Disability in Music Scholarship
“Is this a cripple free zone?” So read a sign once displayed at the famous Block Telethon rally, protesting the negative portrayal of disability in a televised charity event (Cowan 2018; Lisicki 2018). A flurry of recent publications in DS have raised similar questions about modern academia in the neoliberal university: Do such institutions of higher education accommodate and value bodily differences, or are they just “cripple-free zones” (Adjunct 2008; Price 2011; Bolt and Penketh 2016; Kerschbaum, Eisenman, and Jones 2017)? Poor campus and classroom accessibility, inadequate accommodational support, intolerance for learning disabilities, the student debt crisis (especially burdensome for disabled students), and an elitist faith in meritocracy all constitute what DS scholar Jay Timothy Dolmage calls the “steep steps to ivory towers” (2017, 44). “Of course, higher education is ableist” (35), he determines, and its ableism is deeply rooted:
Academic ableism is a difficult thing to consider. Coming to terms with ableism in higher education means questioning, as well, our own privilege, the very system that rewards professors and administrators and placed us at the top of a set of steep stairs. So let’s pay attention to how ableism occurs, and when, and to whom, and to what effect, and let’s pay attention to how we might resist and refuse ableism, and what else ableism is connected to in history, in theory, in practice, and through teaching and research and service. Saying “of course the university is ableist” does not defuse academic ableism. Instead, it often subtly excuses it, subconsciously submerges its roots and branches, and ends a conversation that needs to be just a beginning. (39)
Universities are now regularly sued over violations of the Americans with Disabilities Act, and campus protests over discrimination, accessibility, and healthcare are commonplace. Shortly after I began writing this essay, I learned about a rally for accessibility at Stony Brook University (Trivedi 2019; Adams 2019); now, as I finish, I read of another protest, at the University of Iowa (Wilson 2019). A sign held at that rally should give everyone involved in higher education pause: “The most DISABLING part of my education has been this university not my disability.”
In his memoir, the bass-baritone Thomas Quasthoff relates a shocking story about his application to study voice at a music conservatory: “The German academic regulations require command of at least one instrument—the piano,” the school’s president told Quasthoff’s father. “Your son is—for whatever reason—not capable of doing so, which is why he will not be accepted here” (Quasthoff 2008, 88). “For whatever reason” elides Quasthoff’s disability: phocomelia, including shortened arms that made normative piano performance impossible.
Surely such blatant discrimination could not occur at music schools today, and yet it does, as Téllez Vargas (2018, 144–67) has shown in a study based upon interviews with disabled musicians. Their stories are appalling. One blind musician described a music theory teacher who only accepted graphic analyses of music, rejecting the option of verbal analysis (163).20 Others recounted concerns over sight-reading requirements, or difficulties finding studio teachers willing to train them: “But you’re blind, there’s no way I could teach you,” one student was repeatedly told (162). Beyond sheer prejudice, the “homogeneity principle” that Téllez Vargas has identified is another insidious contributor to ableist discrimination in music pedagogy; for example, he describes how canonical piano treatises “uphold able-bodied privilege” and “ignore individual differences” (48) by focusing their training only on the prototypically normal human body. Music’s “conformational standards” (Howe and Jensen-Moulton 2016, 526) apply not just to notes and chords, as described above, but also to classrooms, universities, pedagogies, and curricula. As Lubet writes, “Disabling instructional barriers are sometimes erected over years of unexamined pedagogical tradition. Music teaching abounds in such obstacles” (Lubet 2011, 141).21
Disabled scholars face similar institutional barriers, as musicologist Samantha Bassler (2009) has shown in a powerful study based on interviews with twenty-five music scholars. “Unhelpful disabilities offices,” “lack of empathy from colleagues,” “refusal to offer accommodations,” “pressure to compensate by over-achieving,” and many other obstacles constitute the “common complaints” that Bassler compiled (§10). For example, one scholar with chronic illness was accused by an administrator of “faking his injuries so that his workload would be lessened” (§10). In another case, a graduate student was denied accommodations because his doctors were unable to identify his medical condition; only later was he diagnosed with multiple sclerosis. Then there is this: “One professor with an invisible illness was told to keep her conditions a secret as long as possible, as her colleagues would turn on her the moment they could ‘smell blood’” (§16). The list of injustices is long, shameful, and damning. Fear of disclosure is a recurring theme in Bassler’s study, particularly over invisible illnesses and disabilities. That makes the seven testimonials from disabled music scholars, which appeared alongside her article in a special issue of Music Theory Online, all the more remarkable. They include James Deaville (2009) and Timothy L. Jackson (2009), who write about depression in academia, and Paul Attinello (2009), who reflects upon the topic of chronic illness. Jeff Gillespie (2009) describes his hearing impairment, and he and Ciro Scotto (2009) explore how their experiences as parents of disabled children affected their careers, scholarship, and pedagogy. Allen Gimbel (2009) explains his work process as a quadriplegic scholar, including the role of an aide who turns pages and plays recordings, his use of dictation software to draft essays, and the difficulty of accessing scholarship in libraries or behind paywalls.22 By publicly engaging with these topics, by bringing awareness to the obstacles that disabled scholars face, these authors resist the dominance of the medical model and its tendency to treat disability as a personal problem, a private pathology. Ableism flourishes under that veil of secrecy. Acts of disclosure are reminders that disabled persons do not live and work in isolation: they are members of societies, communities, universities, ensembles, committees, departments, and classrooms, and their needs, their contributions, their humanity should never be ignored.
For many of these reasons, personal testimony plays an important role in DS. Some of the leading scholars in the field have complemented their academic work with personal memoirs (Adams 2013; Davis 2000; Finger 2006; Linton 2006), and many others unapologetically imbue their scholarship with insights drawn from personal experience (Levent, Kleege, and Pursley 2013; Ostrove and Rinaldi 2013). Music and disability scholars have also made the personal political, whether by briefly disclosing their disability in a footnote or by reflecting more extensively upon the generative relationship between their experiences with disability and their scholarship. For example, John Richard Prescott (2011) concludes his dissertation (a study of John Stanley, an eighteenth-century blind musician) with a chapter that recounts his personal experiences as a blind musicologist; he describes the “extremely visual” nature of scholarly work using archival sources and written scores (64–65), and explains his facility with recorded music over written notation. He also explores his unique connection to his historical subject and identifies how their shared blindness may have affected his scholarship:
My blindness gave me a way into this story which might not be open to sighted scholars. I have had to struggle with many of the same issues as did Stanley nearly 300 years ago. Some of these issues are pragmatic, memorizing large amounts of music that my sighted colleagues can simply read. Others are more subtle and have to do with covering, disclosure and how to negotiate my own blindness within a largely sighted world. I also have firsthand experience with the ways in which sighted people present, represent, and misrepresent blind people and their accomplishments and lives. (70)
Robin Wallace’s (2018) recent study of Beethoven’s deafness similarly intertwines the past and present, the scholarly and the personal. His extraordinary, deeply moving book alternates between these perspectives; as he explains, his work draws upon “my own musical training, my knowledge of Beethoven’s biography and his creative life, and my personal experience watching my wife lose and partially regain her hearing. This is a story nobody else could tell” (10). These perspectives help Wallace strip some of the romantic mythology that Beethoven’s deafness has accumulated over the centuries: “Hearing Beethoven through Barbara’s ears, we can see that his example is more humane than heroic, more typical than tragic” (217). In another intensely personal book, William Cheng (2016b) advocates for a “reparative” approach to musicology, which “would insist on an active search for positivity and potential” in the scholarly community, to make “magnanimous attempts to recognize others’ expressions as worthwhile” (99). He links his interest in this scholarly paradigm to his experience of chronic pain, his exhausting search for treatments, and his difficulty managing both with his professional responsibilities: “The sentiments laid out in these pages originated from times when I most desired rehabilitation, yet was least able to imagine its fruition….I share these stories because, in my mind, what follows makes little sense without a sense of self at the center” (26). These unique perspectives—Prescott’s “firsthand experience,” Wallace’s “Story nobody else could tell,” and Cheng’s “sense of self at the center”—align with the cultural model of disability and its prioritization of disabled subjectivity. The disabled experience is not just a meaningful object of study for music scholars. It is a mode of scholarship itself, shaping knowledge, perspectives, and methodologies.23
Commitment to personal testimony complicates the traditional relationship between scholar and subject, which uncannily mirrors the doctor-patient relationship of the medical model. In both, licensed doctors (medical, musicological, or otherwise) scrutinize their disabled patients (or subjects) from a position of authority, studying them, analyzing them, forming conclusions about them, writing about them. This hierarchy disregards much of what DS holds dear; as Andrew Dell’Antonio and Elizabeth J. Grace write, “a marginalized group should have a pivotal role in defining its own identity and agency within a dominant culture” (Dell’Antonio and Grace 2016, 555). To honor this value, and to respect a disabled person’s authority over their own body, some nondisabled scholars work as mediators or coauthors, sharing their scholarly platforms with disabled partners. For example, Grace (who is autistic) and Dell’Antonio (who is not) conduct their scholarship in back-and-forth dialogue: it is a “fruitful marriage of what is good about autoethnography with what is good about a form of ethnography in which the querent is not directly a member of the set of people studied” (Dell’Antonio and Grace 2016, 555–56).
Michael Bakan adopted a similar approach, which he calls “dialogue-based ethnography” (2016a, 549). His recent book, Speaking for Ourselves: Conversations on Life, Music, and Autism (2018), is largely devoted to transcriptions of interviews with autistic persons, who relate their musical interests and experiences on their own terms; some light narrative framing and a few contextual footnotes are the only scholarly interventions. In her studies of music and deafness, Jessica Holmes (2017a) has sometimes purposefully avoided conducting interviews or fieldwork, opting instead to quote “first-person testimony” from online venues such as blogs, discussion boards, and social media. There, disabled persons (including nonverbal persons) may express themselves “in their own words and on their own terms.” Their viewpoints are “heterogeneous, candid, emboldened, and unencumbered by the set of interview prompts typical of more traditional ethnographic fieldwork” (174). These and other ethnographic approaches attempt to avoid acts of scholarly dominance, exploitation, or appropriation (Cripps 2018, 4), and instead prioritize a disabled person’s rights to self-expression, self-definition, and self-determination.
Across his many publications on music and disability, Straus has raised similar concerns about the analytical practices of music theory (Straus 2006b; 2011, 103–24 and 152–57; 2018, 155–84). “Music theorists are like medical professionals,” he writes. “We diagnose and cure; we normalize abnormalities; we concern ourselves with the integrity and health of our patients” (2018, 161). Branches of what Straus calls “therapeutic music theory” or “normalizing music theory” include music cognition, which tends to limit its studies to “normal,” nondisabled listeners; formal analysis (Formenlehre), which measures individual works against prototypical musical forms; Schenkerian analysis, which subsumes deviant (chromatic) notes under the normative framework of an Ursatz; and set theory, which normalizes stray notes by grouping them into sets.
Notably, this latter analytical field includes some of Straus’s own publications. As an example, he cites his own article, “Uniformity, Balance, and Smoothness in Atonal Voice Leading” (2003), in which he measured voice-leading deviations from the title’s three criteria, each with clear analogues to the nondisabled body (uniform, not disfigured; balanced, not lopsided; smooth and efficient, not slow and bungling). Unlike other post-structural critiques of music theory, Straus grounds his in disability, for example, by charting the concurrent rise of statistical normalcy in medical and music-theoretical discourses, and by noting the embodied metaphors (“balance,” “uniform”) that recur in musical analysis. In contrast to these approaches, Straus defines “disablist music theory” as “the music-theoretical equivalent of an embrace of neurodiversity and biodiversity” (2018, 173). He favorably cites the approaches of David Lewin (“instead of comfortably confirming common-sense ideas about how music goes, [his analytical method] makes familiar things feel strange”) and the Princeton School of Milton Babbitt, Benjamin Boretz, and others (whose work exhibits “a shared aversion to norms and a shared preference for contextuality and individuation of musical works”) (Straus 2018, 175 and 177). In a manner analogous to the inclusive ethnographic approaches of Bakan, Dell’Antonio, Grace, and Holmes, disablist music theory listens to what each musical work has to say; it “valorizes” differences, rather than “explaining them away” (Straus 2018, 183).
With the astonishing outpouring of work on music and disability, with the development of more inclusive methodologies and pedagogies, and with increased attention to the contributions of disabled scholars and the barriers they continue to face, music academia is not the “cripple-free zone” it once was. Much work remains; most urgently, improvements are needed to conference accessibility and the open dissemination of scholarly sources. Further, the field of music and DS remains underdeveloped in two important areas. First, to my knowledge, nearly all scholarship has occurred within anglophone academic circles and has focused largely on Western musical topics, reflecting a geographic, linguistic, and cultural insularity that applies to DS as a whole, albeit to a lesser extent.24 Perhaps this is why the field of ethnomusicology has, with some notable and distinguished exceptions cited above (Bakan, Groemer, Schwartz), only sporadically engaged with DS. More work by ethnomusicologists would help remediate these significant deficiencies. Indeed, in his study of blind musicians in northwest Ghana, Brian Hogan (2016) has already begun to do this, arguing that the “parameters of ableism are culture specific” and proposing a new model of disability (a spiritual model, in which disability is the “necessary result of corrupting spiritual forces”) that is better suited to the community he has studied (126–27).
Secondly, although scholars of music and disability draw extensively upon the work of DS scholars, the inverse is not true. DS scholars have only sporadically engaged with the work of their colleagues in music studies, the work of Michael Davidson (2015; 2019) being a notable exception. The technical, specialized discourse of music scholarship might be to blame for the lack of reciprocity, but only in part. As far as I can determine, just one music scholar has published an article in Disability Studies Quarterly (Straus 2014), the flagship journal of the Society for Disability Studies, and presentations on music at their interdisciplinary conferences are infrequent (but, in my one experience, very much welcomed). If music really does have “much to teach us about the culture of disability” (Howe et al. 2016a, 8), then more scholars of music and disability will need to collaborate with others across geographic, linguistic, and disciplinary boundaries. During its first wave, the field of music and DS has mostly focused its activities inward; its primary goal has been to teach other music scholars about DS. Now—in affirmation of the field’s maturity and extraordinary growth—it is time to face out.
Acknowledgments
I am grateful to Jann Pasler, Joseph N. Straus, the editorial team at Music Research Annual, and the anonymous reviewers of this article for their suggestions and feedback. I would also like to thank Katlin Harris for her expert help with my citations and bibliography.
NOTES
1 Writing about the portrayal of paralympic athletes, Carla Filomena Silva and P. David Howe describe the supercrip as “a stereotyping process that requires an individual ‘to fight against his/her impairment’ in order to overcome it and achieve unlikely ‘success’” (2012, 175).
2 “The argument that disability is not lodged in the individual but in social barriers to full inclusion now seems a rather blunt instrument for describing a wide spectrum of disability experiences. The absence of ramps, interpreters, and accessible transportation certainly helps ‘produce’ disability, but many feel that this division disregards the disabled body and the historical movements formed to represent it” (Davidson 2016, 434).
3 The term disability often does double duty: it is both a category of embodiment (such as gender) and an entry within it (such as woman). Some authors have proposed helpful alternatives. Sami Schalk uses (dis)ability to refer to “the overarching social system of bodily and mental norms that includes ability and disability”; its parentheses suggest “the shifting, contentious, and contextual boundaries between disability and ability” (2018, 6).
4 My repeated refrain, and this iteration in particular, is indebted to a memorable statement by Douglas C. Baynton: “Disability is everywhere in history, once you begin looking for it, but conspicuously absent in the histories we write….It is time to bring disability from the margins to the center of historical inquiry” (2001, 52).
5 Nirmala Erevelles and Andrea Minear describe the “unconscious non-analysis of disability as it intersects with race, class, and gender oppression,” and argue that the “omission of disability as a critical category in discussions of intersectionality has disastrous and sometimes deadly consequences for disabled people of color caught at the violent interstices of multiple differences” (2010, 128).
6 Diagnostic categories for mental disorders are notoriously transient and unstable: they come and go, and as their checklists of symptoms shift, their ranks expand and contract. As antidotes to the medical model’s false sense of permanence, cultural histories of mental disorders (within DS and beyond) have examined the shifting meanings and expressions of multiple personality (Hacking 1995), fugue (Hacking 1998), obsession (Davis 2008), and melancholy and depression (Radden 2003).
7 Mitchell and Snyder describe the four stages of a typical disability narrative: “first, a deviance or marked difference is exposed to a reader; second, a narrative consolidates the need for its own existence by calling for an explanation of the deviation’s origins and formative consequences; third, the deviance is brought from the periphery of concerns to the center of the story to come; and fourth, the remainder of the story rehabilitates or fixes the deviance in some manner. This fourth step of the repair of deviance may involve an obliteration of the difference through a ‘cure,’ the rescue of the despised object from social censure, the extermination of the deviant as a purification of the social body, or the revaluation of an alternative mode of being” (2000, 53–54).
8 The websites of these organizations include regularly updated bibliographies of music and disability scholarship: https://musicdisabilitystudies.wordpress.com/bibliography/ and https://ddstudiessem.wixsite.com/music/bibliography
9 For example, scholars have examined how experiences of disability informed the compositions of Beethoven (Wallace 2018), “Blind Tom” Wiggins (Jensen-Moulton 2006, 2011b), Ivor Gurney (Keyes 2016), and Allan Pettersson (Gimbel 2016); and the performance styles of Django Reinhardt (Lubet 2011, 45–51), Glenn Gould (Maloney 2006), Imre Ungár (Honisch 2016c), and Nobuyuki Tsujii (Honisch 2016b; Téllez Vargas 2018, 82–105). Pianist Stefan Honisch (2009) and singers David Salsbery Fry (n.d.) and Weston Hurt (n.d.) have written insightfully about their own experiences as disabled performers.
10 “Overcoming disability” is an old trope, subject to much critique. As Eli Clare writes, “Overcoming is a peculiar and puzzling concept. It means transcending, disavowing, rising above, conquering. Joy or grief overcomes us. An army overcomes its enemy. Whoopi Goldberg overcomes dyslexia….That concept requires dominating, subsuming, defeating something. Pairing disabled people with overcoming imagines disability as that thing. But how could I dominate my shaky hands, defeat my slurring tongue, even if I wanted to?” (2017, 9).
11 “A one-hand piano concerto…radically rethinks and reshapes the ‘normal’ body of the pianist: Imbalanced, asymmetrical, these extraordinary bodies are defamiliarizing for both eye and ear. We are startled, but also intrigued. We know what a two-handed piano work sounds like—but composers have barely begun to mine the possibilities of one-handedness” (Howe 2011, 107).
12 There is a significant body of scholarship on music in deaf culture (e.g., Best 2015–2016; Cripps et al. 2017; Holmes 2017a; Jones 2016; Maler 2016), including a recent collection of articles published by deaf scholars in the Journal of American Sign Languages and Literatures (Begue and Cripps 2018; Best 2018; Buchholz 2018; Cripps 2018; Dunn 2018; Listman, Loeffler, and Timm 2018; Pirone 2018; Robinson 2018) and the website “Understanding Music through American Sign Language” (http://wp.towson.edu/signedmusic). There are also many important studies of the intersections between music and blindness (Accinno 2016; Hogan 2016; Honisch 2016a; Johnson 2016; Lubet 2011, 69–88; Rowden 2009; Sykes 2016).
13 Elsewhere, McKay has written about the “destructive economy” of the popular music industry: “The indulgence and excess offered by the business [of popular music] to its youthful talent, the possible fragility of creativity, the destructive cycle of public pressure and rehab withdrawal, the narcotic temptation of self-medication, the demands of authenticity or of the touring lifestyle, and the construction and mediation of celebrity, are all potentially destabilizing aspects of the pop music industry itself—in the cognitive context, the question is the extent to which pop disables its own artists, and how far its fans…confirm that disabling narrative both in their desires and their own actions” (2013, 156).
14 As Simi Linton writes, “When faced with intrusive inquiries from strangers that began, ‘What happened to you?’ or ‘What’s the matter with you?’ I usually answered (and still do), ‘It’s a long story,’ or ‘I was wounded in the Battle of the Bulge,’ and move away as quickly as possible. Sometimes it is hard not to answer. A long taxi ride, and the question asked in a concerned voice by a man who doesn’t seem so much rude as mistaken. With only the bits of information I give—yes, an automobile accident; oh no, it was a long time ago; I wasn’t driving; yes, too bad—the man will nod and commiserate and act as if he now knows what is most important to know about disability—its genesis” (2006, 110).
15 Siebers defines the “ideology of ability” as, simply, “the preference for able-bodiedness.” This preference, he says, “defines the baseline by which humanness is determined, setting the measure of body and mind that gives or denies human status to individual persons. It affects nearly all of our judgments, definitions, and values about human beings, but because it is discriminatory and exclusionary, it creates social locations outside of and critical of its purview, most notably in this case, the perspective of disability. Disability defines the invisible center around which our contradictory ideology about human ability revolves. For the ideology of ability makes us fear disability, requiring that we imagine our bodies are of no consequence while dreaming at the same time that we might perfect them. It describes disability as what we flee in the past and hope to defeat in the future. Disability identity stands in uneasy relationship to the ideology of ability, presenting a critical framework that disturbs and critiques it” (2008, 8–9).
16 Critiquing the term cripface, Dominick Evans (2017) finds its appropriation of the history of blackface troubling: “I see the comparison between disabled mimicry and blackface not just in how we talk about disabled people being excluded, but also in comparing the oppression. Blackface comes from a long tradition of outright mocking black people. Disabled mimicry is mocking, but rarely have I seen it done specifically as a form of mocking….Both forms of oppression are bad and cause harm to the communities they represent, but they have such different histories the comparison becomes problematic.”
17 A notable recent example is Ali Stroker’s award-winning performance as Ado Annie in the Broadway revival of Oklahoma! (2019) (Salam 2019). Raymond Knapp (2016) has also described a production of Big River: The Adventures of Huckleberry Finn by Deaf West Theatre (2001–02) that featured deaf and hearing actors; the company’s later revival of Spring Awakening (2015) received widespread acclaim. Relatedly, Andrew Dell’Antonio (2015) discusses nontraditional casting in opera: “Consciously accommodating bodily difference in operatic performance might also bring new insights to roles that are not explicitly understood as disabled.”
18 Disability and music scholars have examined the representations of disabled characters in Il Giasone (Oster 2006), Die Gezeichneten (Howe 2010a, 138–82; Lee 2016), Der Zwerg (Davidson 2015; Lee 2016), Of Mice and Men (Jensen-Moulton 2012), The Phantom of the Opera (Sternfeld 2016), The Light in the Piazza (Fox 2016), and Next to Normal (Fox 2016), as well as in productions by Cirque du Soleil (Jensen-Moulton 2016). Other studies have more broadly examined the representation of disability in grand opera (Blank 2019), modernist opera (Lee 2016), and musical theater (Knapp 2016). The blog Opera and Disability (https://www.operaanddisability.com) is another valuable resource on this topic.
19 The subtitle to James Hepokoski and Warren Darcy’s Elements of Sonata Theory: Norms, Types, and Deformations in the Late-Eighteenth Century Sonata (2006) is particularly revealing in this regard. Although the authors note the “charged edginess and flavor of aesthetic risk” that the word “deformation” connotes, they also advise readers not to “call attention to only the potentially negative slippages of the word ‘deformation’ or conflate them inappropriately with concepts of deformity or disability” (618).
20 Shersten Johnson (2016) investigates the fundamentally visual nature of many traditions of music analysis, especially Schenkerian analysis. Provocatively, she asks, “What does brailling Schenker tell us about Braille?…And what does brailling Schenker tell us about Schenker?” (144).
21 Although much work remains to be done, some of these “unexamined pedagogical traditions” have been recently subjected to greater scrutiny, especially within the music theory classroom. In 2009, a set of articles in Music Theory Online focused on disability pedagogy (Jensen-Moulton 2009; Johnson 2009; Kochavi 2009; Morris 2009; Pacun 2009; Saslaw 2009), and two later studies have explored the relationship between music theory and Universal Design for Learning (UDL) (Quaglia 2015; Gillespie 2018). Much of this work shares an appreciation for the non-normative perspectives that disabled students bring to the theory classroom, and for the broad applicability of the accommodations provided to them. As David Pacun (2009) writes, “One great positive outcome of working with visually impaired students is that it forces one to rethink the ‘how and why’ of conventional theory pedagogy, and hence to consider how music theory might be taught differently. For instance, much can be gained by flipping pedagogical questions around: instead of asking how we might teach ‘sighted’ techniques to visually impaired students, consider asking how ‘visually impaired pedagogy’ might be useful for sighted students.”
22 Gimbel (2009) describes the “catastrophic evaporation of library privileges following resignation from a teaching position” (§4): “Since severe disability usually requires retirement from a university position, use of the kind of library required for such an activity as score study entails the generosity and cooperation of often distant colleagues” (§7).
23 Collaborations between differently-abled scholars have also produced important new methodologies. In their study of song signing (the performance of music in sign language), Jody H. Cripps, Ely Rosenblum, and Anita Small collaborated as coauthors, each contributing different scholarly specializations and embodied perspectives: Cripps (the “insider”) is a “deaf native signer” and scholar of deaf culture; Rosenblum (the “outsider”) is “hearing, and does not know how to sign,” and has training in anthropology and musicology; and Small (the “mediator”) is a “hearing signer and sociolinguist” (Cripps et al. 2017, 8).
24 As Diana Garrisi and Jacob Johanssen have written, “Disability studies as a field has a strong institutional base in the United States and the United Kingdom. This is also reflected in many publications that often draw on examples from the English-speaking world” (2020, 3). Further, Chris Bell argues that the assumptions of DS are largely derived from the disabled experiences of white persons: “White Disability Studies treats people of color as if they were white people; as if there are no critical exigencies involved in being people of color that might necessitate these individuals understanding and negotiating disability in a different way from their white counterparts” (2006, 282).
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