Barbara Kingsolver, founder of the PEN/Bellwether Prize for Socially Engaged Fiction, is frequently asked, "Isn't it risky to mix art with politics?" The answer, she revealed in one of her latest interviews, is "yes"—but "it is also risky to get out of bed in the morning." 1 The PEN/Bellwether Prize, an award that comes with a publishing contract and $25,000 prize money, was originally created by Kingsolver in 2000. It aims to encourage novelists whose work "addresses issues of social justice and the impact of culture and politics on human relationships" to take the risk of further mixing their art with politics. Last year's recipient, Susan Nussbaum, has already been taking this very risk for quite some time. Having been a disabilities activist and writer for many years, the publication of Nussbaum's awarded novel Good Kings Bad Kings marks yet another step in her career as a writer and advocate for disability rights.

When Nussbaum became a wheelchair user in the late 1970s, the idea of being disabled was frightening. In a blog entry published by the Huffington Post, 2 Nussbaum recently admitted: "All I knew about being disabled I learned from reading books and watching movies, and that scared the shit out of me." Having originally planned on becoming an actress, Nussbaum was soon confronted with the barriers of an ableist society and decided to take the path of a writer instead. Since then Nussbaum has become a recognized playwright and a successful actress, mostly performing in her own plays. Through works such as Activities of Daily Living, Telethon, and Mishuganismo, Nussbaum has built a substantial reputation. Still, despite her flourishing career, Nussbaum was repeatedly refused the opportunity to produce what she claims to be "my best play," the material that became Good Kings Bad Kings. Having faced many rejections, Nussbaum began to reinvent herself once more through the genre of the novel.

At the announcement ceremony for the PEN/Bellwether Prize, Kingsolver said that the book "stopped me in my tracks." Good Kings Bad Kings tells the story of seven more or less dis/abled characters whose lives, as different as they might appear, are all in some way connected to an institution called the ILLC—The Illinois Learning and Life Skills Center. This state-run nursing facility takes care of and provides education for disabled youth through the age of twenty-one. Within the first chapters of the novel, it becomes clear, however, that the ILLC is not exactly the haven advertised by Michelle Volkmann, one of the characters. The other protagonists, who either live or work in the facilities of the ILLC, soon reveal a completely different view on the nursing home.

One such character is the teenager Yessenia Lopez, a new resident at the center whose dream it is to one day live independently. Another is Joanne Madsen, a wheelchair user who has just begun to work for the ILLC and who finds herself not only falling in love with one of the male nurses, but, in relation to her own disability, also begins to bond with the young residents in ways much deeper than her paper job requires. In forty-two short yet powerfully written chapters, each of the seven characters traces an individual story. Yet, simultaneously with their stories of compassion, friendship and love, another narrative slowly unfolds. The shorter stories all connect to the one main narrative about ableism and violence: horrifying psychological, physical and sexual abuse is happening at the nursing home and becomes the driving force and common bond within the storyline.

Despite revealing such a shocking truth, Good Kings Bad Kings neither tries to pity its characters nor aims to evoke pity within its reader. Nussbaum has instead chosen to transform the characters' despair and anger into a powerful story about resistance, the re-claiming of agency, and expressions of disability pride—qualities which are often left out of society's master narrative on disability.

Through the structure of Good Kings Bad Kings, Nussbaum seems to have adapted theatrical elements to her novel. It is by metaphorically getting "on" and "off" stage that the characters, one by one, deliver their monologues. Questions about human dignity and the institutionalization of disabled people, which clearly lie at the heart of this tragedy, are discussed through the characters' personal narratives. Through its personalized approach to storytelling, the novel clearly distinguishes itself from statistics and research studies which usually serve as a foundation for the medical discourse that tends to dominate the discussion of disability; thus, the book gives voice to those who are silenced far too often. It is in fact the perpetrators who, for the most part of the novel, are silenced instead. On the one hand, this narrative strategy successfully avoids the risk of victim-blaming within the story. Yet, on the other hand, this strategy also seems to reinforce a certain black-and-white mentality that exists throughout parts of the book.

Particularly the characters who work as care takers can be divided into two groups, those of "the friend" and those of "the enemy." There is for instance the Vice President of Whitney-Palm Health Solution, Tim, who seems merely to think of the nursing facility in terms of financial profit; or Jerry, one of the house parents at the center, who misuses his power to physically and sexually abuse at least two of its residents. Thus, the caretakers, who share a monarchic position within the hierarchy of the nursing home, are "Good Kings" or "Bad Kings"—they are either particularly caring or they are abusive and evil. While I do not deny that both of these sorts of characters are likely to exist in the non-fictional world, I would still like to question the general dichotomy of "good" and "bad" that seems to be promoted by these fictional characters. While this dichotomy is reinforced throughout great parts of the book, it is nevertheless being challenged at one particularly tragic moment within the storyline. It is through the accidental death of one of the residents, that the reader is forced to re-evaluate the general role of the care taker.

By emphasizing and sometimes overstating the negative as well as the positive attributes of different caretakers, Good Kings Bad Kings challenges common perceptions of dependence and independence. The mistreatment of residents illustrates the consequences of being dependent, while independence becomes a highly valued good. Yet, good caretakers such as Ricky Hernandez and Jimmie Kendrick contrast this idea by illustrating the positive effects of care taking and dependence. Interestingly, it is these abled-bodied characters, marked through other identity categories as marginalized themselves, who truly seem to care for their wards. Good Kings Bad Kings is in fact much more than a mere "disability story." The novel thoughtfully includes questions of class, race, gender, and sexuality in its narrative by pointing out the intersections of these identity markers with the category of disability.

Good Kings Bad Kings illustrates that we all depend on help from time to time. The residents at ILLC have to learn the hard way that, while dependence might not be such a bad thing after all, what they instead need to fight for is a reclaiming of agency over their own lives and bodies. While care is in itself not a negative concept, the novel seems to leave its reader with a crucial question: In a time of an extreme increase in nursing homes, what does it mean, and what does it require, to truly provide care without ripping away agency from those who are in/dependent? Through her thoughtfully written novel, Susan Nussbaum succeeds in raising questions of institutionalization by giving a voice to those who are themselves institutionalized.

Endnotes

  1. All quotations by Barbara Kingsolver were taken from the following website: http://www.bookpage.com/the-book-case/2012/06/08/penbellwether-prize-goes-to-susan-nussbaum/
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  2. In order to read the entry "In Her Words" by Susan Nussbaum, please visit the following website: http://www.huffingtonpost.com/susan-nussbaum/in-her-words_1_b_2171185.html
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Copyright (c) 2013 Gesine Wegner



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