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Reflecting on a disability through the language of art is particularly significant because it is the art that most comprehensively expresses the irrational dimension of the illness narrative. The present artwork represents an illness narrative about invisible disability and its essential attributes. To be specific, it focuses on people who had one of their limbs amputated and replaced with a prosthesis. The artwork appears to be a dark-colored book with some of the pages substituted with aluminum foil, which makes the sheets half the original and half “prosthetic.” The aluminum foil is attached to half of the page and represents that the artificial limb is attached to half of the usual limb, such as a lower leg prosthesis. Various elements of the artwork each portray a particular side of the illness narrative that is inherent to these people. This paper analyses the artwork concept and its elements are given the illness narrative of invisible disability.
Experiencing a Disability
The dark colors of the cover represent the emotions that a person might experience from the stigmatization of society treating him or her as being different or out of normal. According to Kleinman, the term “stigma” is used “to refer to a person marked by a deformity, blemish, or ugliness.”1 Stigmatization of a particular disease first occurs in society, and then the individual internalizes that stigma into an inner sense of shame and inferiority. Several artists attempted to express the inner state of self-rejection and struggle against their disease through various means of expression. Alfonzo devoted his painting Grief to his fight against AIDS and the hard feelings associated with coping with death.2 Its dark, depressing colors and chaotic elements demonstrate the dynamics of a person’s existence in constant fear and struggle. A person with an amputated limb can also suffer from such experiences, especially before surgery and immediately after the installation of the prosthesis. Furthermore, thoughts of social non-acceptance and stigmatization may cause an enormous fear for the future and, subsequently, guilt about disability and deformity.
Experiences can concern not only the fear of social reaction but also be related to intrapersonal beliefs. In The Wounded Storyteller, Frank states that a “serious illness is a loss of the destination and map that had previously guided the ill person’s life.”3 This kind of disease completely changes the picture of the worldview and the person’s place in it. The path that previously seemed to be delineated disappears, and it is perceived as major trauma. It should also be noted that the self-perception of an individual with prosthesis shifts fundamentally. After an amputation, the person feels like a child for some time while learning to do the simplest things once again. A similar attitude was also reflected in The Yellow Wall-Paper by Perkins Gilman, where the main character felt “like she was being treated like an infant.”4 The difference, however, is that the woman in the story did not consider herself to be infantilized, and the individual after the operation is experiencing infantilization.
The person overcomes the amputation of a limb and learns to operate with a new part of a body that necessarily brings huge changes in the life process. This is exactly why the serious, life-changing disease is described in The Wounded Storyteller as both a physical wound and a mental one.5 The book with aluminum foil instead of pages is unusual to see, touch, and read, it dissipates the conventional perception of books. Equally, a person experiences an unfamiliar sensation when using an artificial limb. It takes time not only to learn to cope with the new limb but also to integrate the perception of the new body part into the self-concept and vision of the future life.
Invisible and Visible Disability
The characteristic feature of a prosthesis is that the other person usually does not observe it. The invisible disability is experienced and integrated into the person’s inner world especially. According to Scarry, “pain is difficult to express or share”, and it “is visually invisible in another person.”6 At the same time, Garland-Thomson analyzes visible disabilities and claims that, “they are always being stared at.”7 These approaches to the phenomenon do not contradict each other but analyze its different aspects. While Scarry explores the pain of a person with an invisible disability and the opportunity to express it, Garland-Thomson analyzes the interaction between an individual with a visible disability and those who stare at him.
A person with an amputated limb may experience pain as an individual feeling that cannot be shared, and that should be silenced. In that case, the presence of a prosthetic limb is perceived as a secret that occasionally causes discomfort. This attitude is characteristic of people with monadic other-relatedness, as indicated by Frank.8 The invisibility of a disability is reflected in the artwork by the fact that aluminum foil replacing the pages is not visible when the book is closed. At the same time, when it is closed, no one can stare at the “prosthetic pages”, as is the case with a visible disability. However, some people prefer not to disguise their artificial limbs, such as Viktoria Modesta.9 In this case, the way the prosthesis is demonstrated and the way people perceive it will determine the type of staring as Garland-Thomson describes it.
Consideration should also be given to the peculiarities of experiencing possible intimacy with another person. Kleinman brings up the case of Susan Milo, who had an invisible colostomy bag, which created a fear of intimacy since it was perceived as “so unnatural, so dirty.”10 Being close implies sharing a painful experience with a loved one, which can be difficult, especially when doing it for the first time. A book with aluminum foil instead of pages may be perceived as defective and abnormal, and at first, it might seem that an ordinary book would be preferable. This reaction is, to some extent, similar to the one that occurs when an individual discovers that his or her partner has a prosthesis. At the same time, accepting this fact may overcome the fear of intimacy.
Rehabilitation and Coping with a Disability
An essential component of the artwork is the presence of text on aluminum foil. It symbolizes that the prosthetic limb is meant to help with rehabilitation and is designed to perform the same functions as the original part that was removed. Charon states that “when people become sick or disabled, they question their existence in new ways.”11 By this, a person may realize that the artificial limb may improve mobility and ability to manage daily activities, as well as provide the means to stay independent and self-serving.
The strategy that a person has adopted about the disease largely determines the success of rehabilitation and coping. Frank describes “four ideal typical bodies” that are four types of embodiment depending on body-relatedness, other-relatedness, the ability to control the body and to identify its desires.12 Depending on the types mentioned above, it is possible to develop a strategy for coping with a new limb prosthetic. The fact that a U.S. senator, Tammy Duckworth, has prosthetic limbs confirms this conclusion.13 According to Charon, “the healing process begins when patients tell of symptoms or even fears of illness – first to themselves, then to loved ones, and finally to health professionals.”14 Thus, silencing the disease negatively affects the coping process, and this artwork is an attempt to comprehend the experiences of people with prosthetic limbs and to draw attention to the challenges that arise in rehabilitation.
The appearance of the artwork illustrates the experiences of people with a specific disability that arise from social stigmatization, feeling of being lost, and new self-perception. The aluminum foil cannot be observed while the book is closed, which symbolizes the invisibility of a disability. Moreover, it is attached to half of the page as well as a real prosthesis. The acquaintance with such a book may cause confusion, which is also possible when getting to know a person with an artificial limb. The writing on the aluminum foil represents that its purpose coincides with the purpose of the ordinary pages, as well as the function of the prosthetic limb is the same as that of the original.
Charon, Rita. 2006. Narrative Medicine: Honoring the Stories of Illness. Oxford: Oxford University Press.
“Eating Disorder Cont and Disability Studies.” PowerPoint presentation, slides 1-8.
Frank, Arthur W. 2013. The Wounded Storyteller. Chicago: University of Chicago Press.
“HIV AIDS 2019.” PowerPoint presentation, slides 1-26.
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Kleinman, Arthur. 1989. The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books.
“Yellow Wallpaper 2(1).” PowerPoint presentation, slides 1-5.
- Arthur Kleinman, The Illness Narratives: Suffering, Healing, and the Human Condition (New York: Basic Books, 1989), 158.
- HIV AIDS 2019, slide 5.
- Arthur W. Frank, The Wounded Storyteller (Chicago: University of Chicago Press, 2013), 1.
- Yellow Wallpaper 2(1), slide 2.
- Frank, The Wounded Storyteller, 1-27.
- Eating Disorder Cont and Disability Studies, slide 4.
- Frank, The Wounded Storyteller, 30.
- Eating Disorder Cont and Disability Studies, slide 7.
- Kleinman, The Illness Narratives, 163.
- Rita Charon, Narrative Medicine: Honoring the Stories of Illness (Oxford: Oxford University Press, 2006), 87.
- Frank, The Wounded Storyteller, 30.
- Eating Disorder Cont and Disability Studies, slide 8.
- Charon, Narrative Medicine, 65.