The Taboo of Injury and Disability in Music
“It was impossible for me to tell people, ‘Speak louder, shout, because I am deaf.’ Oh, how could I possibly admit a weakness in the one sense which should be more perfect in me than in others.”
Beethoven, Heiligenstadt Testament, 1802
Musicians expire. For some lucky members of the profession, the musical expiry coincides with their date of death, preferably after a long, productive, and unimpeded musical life. Polish-born pianist Mieczysław Horszowski’s last concert was in Philadelphia at the age of 99. In 1971, the New York Times wrote about the then 94-year-old cellist and conductor Pablo Casals’ performance, “They virtually had to lift Pablo Casals into the conductor’s chair at yesterday afternoon’s United Nations Day Concert, but once there, with baton firmly in hand, any sign of weakness vanished.” For other members of the profession, their bodies will at some point in life present hindrances to their music-making. This may arrive in the form of an injury, accident, or disease. As harrowing as it may be, the affected musician will need to develop and implement a series of adaptions, compensations, or other strategies in order to maintain a level of expertise, thereby fulfilling their own and others’ artistic expectations and professional obligations. If this is not possible, they are faced with the worst consequence: to withdraw from the profession.
For dancers, this is a given. A study from 2004 queried dancers’ perceptions on the end of their careers: most planned to continue dancing into their 40s, an expectation slightly more optimistic than that presented by statistical data, which finds that they typically retire in their mid-30s. Though the process of a dancer’s early retirement is fraught with difficulty, including lack of resources, insufficient training or education outside of dance, and lack of preparedness, there are resources available to assist: there are currently eight organizations internationally (Canada, France, Germany, Korea, the Netherlands, Switzerland, the U.K., and the U.S.) that provide counsel and assistance for dancers needing to transition into a new career.
Musicians, however, are most often left to their own devices. A recent conversation I had with a well-known and highly-regarded British pianist and teacher highlighted this. Upon the somewhat reluctant revelation of a genetic degenerative disorder which will gradually pull several of his fingers into an intractable claw, he spoke of his decisions regarding repertoire choices, and the eventual phasing out of his performance career, concluding that he had been fortunate to have had good hands for the first half of his life. Cellist Jacqueline du Pré, who first noticed the effects of multiple sclerosis on her playing at age 26, compensated for her decreasing ability to perceive tactile and stimuli by depending on visual cues. In 1978 she recalled, “I had to reconstruct my life. But I have found a great deal to do. I go to concerts and see my friends. And the music is still alive in my head.”
Joseph N. Straus, in his book on disability in music, identified four roughly chronological ways in which Western society understands disability. Firstly, it was seen as an affliction—divinely pre-ordained—often an emblem of one’s moral ineptitude (ex.: Frankenstein, Captain Ahab, Darth Vader, and a more recent social manifestation in the religiously-conservative narrative surrounding the acquisition of AIDS, as displayed by evangelical pastor Jerry Falwell: “AIDS is not just God’s punishment for homosexuals, it is God’s punishment for the society that tolerates homosexuals”).
Secondly, it was considered to be a sign of divine grace which deepens human experience. The popular narrative surrounding Beethoven’s deafness often falls into this category: it enabled him to possess a privileged insight into the human condition. His deafness was also something to be musically overcome by his strength of will and perseverance.
This leads to the third view of disability: as something at odds with an accepted view of normal, in which the effects of the disability should be eliminated and/or transcended. This view of disability flourished throughout the 19th century when all European languages invented a word for “normal,” and when newly emerging statistical models such as the bell curve viewed disability as a pathology to be overcome by medical or other therapeutic interventions, as well as by individual effort.
The last, more recent view of disability, as a social, personal, and cultural identity, arose more recently. In this view, disability can be affirmatively accepted, even embraced, as an indispensable part of personal identity.
Performing musicians and the communities that surround them (e.g. educational institutions, managers, and audiences) tend to reject the latter interpretation of disability, instead vacillating between the pre-enlightenment concept of affliction (albeit without ascribing divine involvement) and the 19th century model of normalcy. In this hybrid view, musicians’ disabilities are often viewed as a sign of weakness or a lack of commitment to their art. Musicians cycle through a large number of medical, psychological, and alternative (even esoteric) solutions for removing the impediment of the disability. The idea of embracing a disability as a source of personal (and hence musical) identity would be laughable to many musicians, as this would involve violating a set of musical standards which are increasingly codified and competitive in the modern world, in which a great emphasis is placed on an individual’s market value.
Viewing the musician as a commodity within a cultural marketplace entrenches a rigid view of musicians’ disabilities. Musicians tend to speak with reluctance about their disabilities, but when they do disclose information, a common phrase emerges over and over: that of being “damaged goods.” It indicates a reflexive and unchallenged acceptance of their role as a commodity within the music-business machinery. An adjective carelessly and frequently used in music reviews as a synonym for superlative artistry is the crass and demeaning term “bankable.” In such a musical marketplace, there is little place for “defective” musicians, and to challenge this assumption would be considered naïve and utopian.
Musicians who acquire a disability bear the brunt of responsibility for managing the effects of the disability on their ability to practice their art. Some fortunate ones can successfully carve out a support system of relatives and close friends, doctors and accommodating colleagues and administrators. Other musicians face a perilous period of transition and reorganization, experiencing financial instability due to loss of income and position, psychological stress arising from shifts in identity and self-reproach, and ostracization from their communities. The flutist Jennifer Borkowski, who suffered from sudden-onset paralysis on the left side of her face, which required years of treatment and personal effort to regain the ability to play her instrument, writes about the difficulties surrounding the disclosure of her disability: “There is a strong societal expectation to talk publically about illness in order to help others, but I found very few were comfortable about hearing about it one on one. I can talk about it now, but only now that it is over.” A violinist I interviewed wrote: “For all the talk of ‘telling your story to inspire people,’ no one wants to hear the story, until you’ve fully transcended your illness and stand there a hero… In a nutshell, if you can’t ‘do’ you no longer ‘are.’ ”
Almost every musician I interviewed in my study of musicians’ perceptions on their acquired disabilities spoke of being told by a doctor, colleague, or teacher that their disability might be psychosomatic, meaning that it is a physical manifestation of an inner resistance or tension to being a musician. Without denying the interconnectivity of biological and psychological factors with regard to health, this kind of simplistic attribution can be damaging. It was commonly said of du Pré that her illness arose from her mother pushing her too hard and depriving her of a normal childhood, a wildly speculative claim that has no scientific foundation. Perhaps a less speculative claim would be, that if du Pré had had access to the kinds of drugs developed within the last two decades for treating MS, her life and career would have been substantially prolonged.
An environment in which issues surrounding musicians’ health are considered taboo prevails. Musicians fear the negative impact of disclosure, thereby limiting their exposure to early forms of support (medical, therapeutic, social, and perhaps fiscal), coupled with a lack of infrastructure for assisting them in reevaluating their place within the community following the onset of illness or disability. The impact of musicians’ disabilities are widespread and devastating not only for the musicians themselves but for the larger community surrounding them.
A famous case of a musician’s illness shrouded in secrecy and misinformation can be seen with the conductor James Levine, who struggled with Parkinson’s disease for several years preceding his recent retirement from the Metropolitan Opera Orchestra in New York. The disease’s progress was undoubtedly exceedingly difficult for Levine himself, but what often goes underreported is the impact of his disease on the lives of the musicians who worked for him. A violinist who plays with the Boston Symphony Orchestra, where Levine was music director from 2004 until 2011, described the stress of working under Levine to me as “absolute fucking hell.” The orchestra members endured years of uncertainty in which the illness was treated by Levine and those close to him with denial and painfully inadequate attempts at compensation (for example, Levine began speaking more and more at rehearsals to conceal his inability to physically model the intended musical gesture). The musicians felt powerless to exert any influence on the situation.
In the absence of an open discussion regarding musicians’ disabilities, guidelines for the rights and responsibilities of the musicians and the organizations surrounding them, and institutions designed to assist the musician through periods of transition, the already precarious existence of a musician can be broken by such common human experiences as aging, disease, and accident. Musicians who are forced into retirement due to a disability often become invisible, and a lack of attention to these musicians is often mistaken for a low prevalence of career-impacting illnesses in the field. Many, if not most, musicians will at some point in their lives experience an injury, illness, or accident that will affect their ability to practice their art and profession. Too many will experience a complex web of ostracization, marginalization, and irrelevance. Without the introduction of a framework for open discussion as well as the creation of targeted institutional support, these unfortunate performers may blithely be discarded into a netherworld reserved for broken—or expired—musicians. ¶