Disability and Representation


In Joseph N. Strauss’s chapter, “Extraordinary Measures,” he explores the intersectionality of music and disability. Strauss examines the concept of performance on a stage and through social interactions, touching on aspects of society such as the “normative stare” (128). Through his study of the experiences of multiple musical performers that possess disabilities, his central focus is to demonstrate the ways in which society imposes perceptions on people with disabilities, and how performing music can combat and re-shape that perception. 

Strauss begins by drawing similarities between attending a prodigy’s musical performance and attending a freak show. He elaborates that in both cases, the audience is intrigued and even unsettled to witness the extraordinary ability of a “human embodiment so like and yet unlike their own” (125). This aspect becomes more prevalent when it comes to the public reception of musical performers with disabilities, and are faced with the question of whether they use their disability as an economical gain. It raises the question of whether using one’s disability to their advantage is embracing their disabilities or conscious exploitation. 

The role of disability in one’s identity is further explored in the chapter’s examination of the word “performance” (126). Similar to how one performs music, Strauss argues that gender and disability are “not something you are, [but] something you do” (127). He suggests that gender and disability are social constructs that emerged from regulatory practices of how individuals socially interact and cites Garland-Thomson’s observation that it is the “normative stare [that] constructs the disabled” (129). Strauss elaborates on this notion with the example of John Belluso, a playwright who used a wheelchair, and his experience on boarding a bus: “When I get on a bus, all heads turn and look […] it’s like I’m on a stage” (128). Belluso’s deviation from a normative body consistently causes attention, even when unwanted, and he admits that he feels like he’s performing his disability. Additionally, Strauss argues that a performance of disability includes charm and humor in order making the nondisabled feel at ease. When it comes to musical performers with disabilities, they are compelled to neutralize their disability for the audience, or in some cases even attempt to perform as able-bodied. This exemplifies how it’s the social culture that urges the nonnormative individuals to conform or masquerade their differences. 

Strauss also illustrates a positive aspect of having musical performances by an individual with disabilities as it allows them to “challenge the normative stare” (129). Music allows performers with disabilities the chance to express and properly represent themselves, especially in a culture that imposes false stereotypical roles on their lives. Strauss demonstrates how this is embedded in western literature, where individuals with disabilities possess four archetypes: the Demonic, Charity, Realistic, and Survivor Cripple. These archetypes continue to influence the cultural perception of these performers, as numerous critical reviews exhibit: “from the instant Thomas Quasthoff begins to sing, all awareness of his disability simply melts away” (139). 

Successful performers with disabilities are often subjected to the cultural narrative that they overcame and triumphed over their disability. Strauss argues against this notion, and states that it’s because of their disability that they are able to create wondrous music, thus it is their unique experiences and perspectives that provide a new style of skill. 

In the final pages, Strauss examines four artists with disabilities and their experiences of performance. Oftentimes the musical performers are subjected to the juxtaposition between the beautiful music they create and their nonnormative bodily state. Within the multiple excerpts of interviews, the artists share the struggle of being solely defined by their disability. It also raises other issues of whether they properly represent the disabled community, if their desire to be seen as only an artist distances themselves from other disabled people, and if the reason for their success is due to their disability.

source: nytimes.com


The role of a disability is an inseparable aspect of musical performers, and the music industry has shown that it is a platform where artists with disabilities can succeed. However, their success is revered in society, raising the issue of the responsibility they have to represent disability culture.

The tension between responsibility and representation is exemplified through the ways that the performers with disabilities interact socially with the nondisabled. Thomas Quasthoff, Evelyn Glennie, and Itzhak Perlman are celebrated in the music industry, but have stated their dislike of constantly being asked about their disabilities. Glennie even goes so far as to distance herself from the deaf community, stating that “Deafness is simply an irrelevant part of the equation” (147). This raises questions about disability culture and its representation: is culture an inherent quality? Should Quasthoff, Glennie, and Perlman feel obligated to represent the disabled community? One could argue that the performers should use their platform to advocate and represent the strife in disabled communities. As Strauss explained, performing onstage allows for the individuals that have been subjected to the normative stare the chance to combat and challenge the inaccurate social perception. This is an opportunity that most members of the disability community will never have, which stresses the importance of the few significant individuals with disabilities that have the platform to convey this message. However, disability is a term that is entrenched in politics, especially when it relates to public office, infrastructure, and social policies. Since Quasthoff, Glennie, and Perlman all perform art, this leads to the common and long-debated belief that art and politics should remain separate. Though both arguments focus on the role that art has on society, the strife of individuals with disabilities has been overlooked for centuries. By distancing oneself from the community, as Glennie did, it can fuel the false perceptions of the disabled communities, such as the narrative of overcoming a disability, implying that the disability is an obstacle rather than an element of their performance. Thus, there is an obligation to represent and advocate for personal communities, because inaction and neglect will only further extend the injustice. 

However, whether culture is an inherent quality is a more complex topic to address in binary terms. Disability culture is not a monolithic experience, but rather increasingly diverse, and culture is contingent upon one’s environment socially. This is immensely apparent in the childhoods of the musical performers. Both Perlman and Glennie, were raised in households and communities where their disability was not seen as abnormal and were accepted among their peers. However, Quasthoff initially experienced discrimination, citing that his thalidomide was the reason that he was rejected from schools. This prejudiced and hostile experience impacted Quasthoff, as he strongly identifies with the disabled community and is indignant of their struggle: “I am not here to assuage the guily of a society that […] punishes its physically incapacitated with constant disrespect” (140). Thus, Quasthoff is largely familiar with the racial discrimantion that is a major element of disability culture, and feels compelled to share the injustices that the community faces. However, at the start of their careers, Glennie and Perlman didn’t identify with the disabled community and culture, but disassociated themselves from it. Perlman did not welcome “discussions of his disability” (146) and found it “demeaning to be identified in terms of his disability” (146). Similairly Glennie, felt that discussing her deafness in relation to her music is “irrelevant” (147)  and insignificant. This suggests that due to Perlman’s and Glennie’s welcoming childhoods, they were not accustomed to being defined and identified by their disability, in the way that Quasthoff was. This illustrates that discrimination in disability culture, is not necessarily inherent, and for some individuals the culture must be learned and experienced in order for it to be recognized. One can see this in the shift of how Perlman and Glennie currently view themselves in relation to communities with disabilities. Perlman now accepts and wants to be identified by his disability, and will often speak of common aspects of disability culture: inaccessibility and the normative stare of the nondisabled. Glennie recently began to learn sign language, and because she is recognizing an aspect of the deaf culture, she is able to better appreciate the role it can play in her life. This further exemplifies that culture doesn’t necessarily need to be inherent, although in some cases it is, but it’s through lifelong experiences that aspects of a shared identity are formed. 

Since the disability culture is not a monolithic experience, it is unjust and impractical to oblige one individual from the community with the task of complete representation. The only accurate representation is a holistic one, and in order to have that, the society needs to create accommodations to diversify the social platform.

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