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Narrating Disease and Deviance in Media for Children and Young Adults / Krankheits- und Abweichungsnarrative in kinder- und jugendliterarischen Medien

von Nina Holst (Band-Herausgeber:in) Iris Schäfer (Band-Herausgeber:in) Anika Ullmann (Band-Herausgeber:in)
©2016 Konferenzband 295 Seiten


Narratives of disease and deviance have a long tradition within the field of children's and young adult literature. The specific characteristics of these representations have so far remained largely unexplored. The topics of this book are the narrato-logical and aesthetical particularities of these discourses.
Krankheits- und Abweichungsnarrative haben im Feld der Kinder- und Jugendmedien eine lange Tradition, deren Spezifik bisher nahezu unerforscht geblieben ist. Die Beiträge fokussieren und diskutieren medien- und epochenübergreifend narratologische und ästhetische Eigen- und Besonderheiten dieser Darstellungen.


  • Cover
  • Title
  • Copyright
  • About the Editors
  • About the Book
  • This eBook can be cited
  • Table of Contents
  • Acknowledgements
  • Introduction: Differential Diagnosis
  • Part I: Historical Perspectives Historisches
  • Über Krankheit und Gesundheit in der englischen Kinderliteratur: Eine Fallstudie über Gesundheit und Behinderung im Werk von F. H. Burnett
  • Part II: Interdependencies: Adolescence and Psychological Disease Wechselspiele: Adoleszenz und psychische Krankheit
  • Hysteria as Aesthetical Strategy in Recent Youth Literature on Male Adolescence
  • „Ich bin deshalb nicht schizo. Nur erwachsener, wenn es darauf ankommt.“ Aspekte der gestörten Adoleszenz in Nils Mohls’ Es war einmal Indianerland
  • Magersucht als populäres Thema der Jugendliteratur
  • Out of Control: Body Imagery and Imaginary Bodies in Katie Green’s Lighter Than My Shadow
  • Part III: Paternalism and Agency Paternalismus und Ermächtigungspraktiken
  • Child Coping Competence. Astrid Lindgren’s The Brothers Lionheart from a Medical Ethics Perspective
  • Gleichwertigkeit statt Paternalismus – Vom Umgang mit Krankheiten in der zeitgenössischen deutschsprachigen Afrika-Literatur für Jugendliche
  • Part IV: Narrating Deviance Abweichungsnarrative
  • When Allegory turns into Symptom: The Terrible Diagnosis that Happened to Barnaby Brocket
  • „Loser like me!“ Darstellungsweisen von Andersartigkeit und Behinderung in der amerikanischen Fernsehserie Glee
  • Part V: Sick-Lit as a Contemporary Phenomenon Zum Phänomen der Sick-Lit
  • Jugendliteratur über Pest, Aids und Krebs: Eine Bestandsaufnahme
  • Kranke Helden? Der Heldendiskurs im Kontext von Krebsnarrativen
  • Side Effects of Writing About Cancer: Categorising The Fault in Our Stars
  • Sickness and Deviance in Children’s and YA Literature: Treatment
  • Contributors
  • Series Index


Our gratitude goes to the WILLY ROBERT PITZER STIFTUNG for their generous support, which made it possible for us to turn an inspiring conference into a book. This book would not have been possible without the presentations and discussions we had with everyone at the 2014 conference Sick [sic!?] Sickness in Media for Children and Young Adults and we would like to thank AGNES BLÜMER, our co-organizer, as well as NORA STIES, ASHLEY WILSON and LINDA NESBY, who are not a part of this anthology, for their contributions during the conference. We would also like to thank the Institute for Research on Young Adult Literature, the Frankfurt Humanities Research Centre and the Calliopean Society e. V. whose generous support made the conference possible. And it would not have been caffeinated, or run smoothly, without the indispensable help of ANNA HÄRLE and NATALIE VEITH. ← 7 | 8 → ← 8 | 9 →

Nina Holst, Iris Schäfer and Anika Ullmann

Introduction: Differential Diagnosis

This anthology focuses on narratives of and about disease and deviance in media for children and young adults, and reacts to recent developments, such as the so-called Sick-Lit which has so far remained largely unexplored. These trends inspired us to organize an interdisciplinary conference in 2014 in order to work out typical characteristics and encourage further studies. Most of the articles included in this book, are based on conference-papers. However, in order to render a well-structured impression of these specifics, we included further essays. The selected twelve contributors discuss notions of sickness and/or deviance as motifs as well as modes of (re)presentation and/or metaphor. The aim is to highlight literary and medial strategies within these works of fiction. As sickness, health and deviance are examined by diverse scientific disciplines and represent concepts that vary and overlap (depending on cultural and societal ideas or ideals), an overall or general appraisal is all but impossible. The health issues the characters suffer from (or encounter) range from the plague to reversed ear canal induced floating. In literary or other medial representations these diseases and deviances are the product of an artistic process rather than the product of a medical discourse. Yet these representations potentially exhibit an insight into changing cultural ideas of what marks a state as pathological or deviant and conversely what is said to be normal or healthy. Apart from these aspects they may also offer criticism, role models or the potential to afflict the reader (sometimes literally, sometimes figuratively).

When a disease becomes visible through specific symptoms, it unfolds its own language, and gains the agency to communicate. This agency is often broken, but sometimes amplified by the afflicted character, pushing the patient and sickness into a symbiotic relationship. By mapping the symptoms of a diseased protagonist, the reader might be positioned in the place of a physician or an analyst. Readers might also engage with the text on an empathetic level, rather than an analytical one. In these cases, narratives are used to allow access to an otherwise foreign experience. Engaging with these fictive experiences carries with it an opportunity as well as danger. The addictive qualities of literature as well as the therapeutic qualities of reading and writing have long been observed and critically examined. Especially critics of children’s and young adult media have seen it as their responsibility to scrutinize the narratives created for younger readers. Neither the depiction of diseased children in literature nor literature about sickness that is aimed ← 9 | 10 → at children is anything new. Many stories by Charles Dickens feature young sick characters, as does Hans Christian Anderson’s Den Lille Pige Med Svovlstikkerne (The Little Match Girl, 1845). Still, recent journalism has created the neologism Sick-Lit in order to discuss a phenomenon that, though not new, does appear to be more productive than it used to be. Jessica Honnor describes the impact of illness in YA literature and ascertains that

Rather than judging texts or films on their suitability, the articles in this volume focus on the use of the pathologically different as a strategy of narrative.

Traditions, Developments and Trends

Disease and deviation as topics and/or motives of media for children and young adults have a long tradition. With regards to the representation of psychological and physical diseases, certain developments can be observed. Regarding the depiction of psychological diseases in children’s and young adult media it can be said that a whole range of media on protagonists suffering from depression, anorexia nervosa, bulimia, attention deficit hyperactivity disorder and similar psychological diseases exist in contemporary examples. A fact that might be revealing in regards to modern Western society and the psychological diseases it displays, diagnoses, treats and normalises. However, it seems that most recent texts mainly create the picture of a suffering individual, in order to generate sympathy for these characters and create a site of empathetic identification. Many texts appear pedagogic in nature, offering a clear mission to learn about a disease either as something that afflicts others and requires social awareness or as a disease that needs to be recognized and ‘correctly’ treated in these characters. Deviance is therefore marked in all these texts in order to produce an identificatory reaction. The young reader may learn more about a specific mental disease and sometimes might be able to identify with the protagonist. Creative exceptions are rare; Lara Schützsack for example in her novel Und auch so bitterkalt (2014) on anorexia neurosa focuses on the aesthetic dimension of the disease rather than (only) representing the challenge for the one suffering and their surroundings, in order to create sympathy. ← 10 | 11 →

With regards to physical diseases there is an observable difference in recent depictions and a new focus on representations of chronic and fatal sickness. Novels like John Green’s The Fault in Our Stars (2012) or Jenny Downham’s Before I Die (2007) feature a new fatalism as well as a new playfulness. The so-called Sick-Lit emphasizes sickness as a state when the finiteness of existence becomes especially apparent. This state of awareness bears a certain resemblance to adolescence, a phase when deviance from norm is accepted, mind and body are changing and perception shifts drastically. In these texts sickness and adolescence sometimes occur as similar phases (cf. Schäfer 13). When the protagonists are confronted with their mortality, the psychological and philosophical dimension of both states are affected. From a psychological point of view adolescence itself could be regarded as a phase that is distinguished by the tendency to develop mental diseases, for diseases as anorexia neurosa almost exclusively occur during adolescence (cf. Olson 37). According to Tilmann Habermas, the adolescent’s mind is weakened by the fundamental changes of this period (Habermas 21). Or, as Peter Bloss in On Adolescence (1966) argues:

Much research has been done during the last fifty years and the assertions that Bloss has made are now restated in many fields, such as the neuro-sciences or psychology. While results of course vary, there is a general consensus that adolescence is ‘real’ in a scientific sense. It is an observable and measurable deviation from a traceable development1, reiterated and consolidated by the scientific processes that have made it their object of study.

Adolescence and Disease

Aside from this condition, adolescence features a structural similarity to a disease, thus both, adolescence as well as a disease, could be regarded as a phase of isolation outside of the ‘healthy’ grown-up society that surrounds the adolescent and diseased individuals. Within this isolation the adolescent and the diseased have the chance to find and redefine their sense of self. They can learn how to adapt their changed ← 11 | 12 → identity to the surrounding society that now appears to them in a different light. The adolescent’s struggle sometimes resembles the struggle of a patient, trying to overcome a temporary disease. Or, as Elman argues: “…adolescence and disability increasingly became conjoined categories as rehabilitative narratives of ‘overcoming disability’ aligned with ‘coming of age’ ” (Elman 169). The intensity of this struggle is mainly measured by the demands of the environment, with which the adolescent protagonist is confronted. It can be observed that within literary representations of diseased adolescents the contrast between culture and nature has been marginalized since the early 1980s. This may be a result of the reduction of generational conflicts. In this context Erikson’s idea of adolescence as a way of life between childhood and adulthood should be reconsidered. Adolescence now can be seen as a feeling, a brand, and a way of life, without being limited to a certain generation (cf. Schäfer 231). It has become desirable to physically and mentally remain young. Due to this development it seems unsurprising that the structures of the described societies are seldom static. In this context it is obvious why a shift from the depiction of a collective fate, by means of protagonists whose problems could be compared to a whole generation – as it is the case in German School-Novels from the turn of the century (cf. Schink 8), for example Emin Strauß’ Freund Hein (1902) or Hermann Hesse’s Unterm Rad (1906) –, to the representation of an individual development and a protagonist, who features individual problems that can be observed. Within earlier representations, the task to adapt to a grown-up society, whose values and ideals are described as static, is seen as a universal task. Recent representations predominantly focus on individuals with unique problems that occur during the process of balancing their (adolescent) identity with a modern society that is far from being static (cf. Wagner 432). Obviously the result of this process, the ‘mature’ identity, cannot be static. Within a modern fast moving society, the creation of part-time and multiple identities becomes an option (cf. Wagner 432) or even a necessity. This leads to an extension of adolescence, which continuously threatens to become a permanent state. Thus adolescence itself is no longer connected to the task of finding and defining a grown-up identity – it seems to have become a life-long search for a flexible identity that fits the changing norms of a modern, fast changing society, and that can adapt quickly to different demands. In modern texts the struggle of adolescence, which is understood as a disease, therefore no longer resembles a temporary affliction that has to be overcome, in order to create a mature identity and become a reasonable member of society. Now it must be regarded as a chronic disease, a condition that the protagonists have to deal with, without any prospect of overcoming this phase in order to gain a new condition (cf. Schäfer 249). ← 12 | 13 →

Trends and Consequences

These recent developments within the depiction of disease and deviance in media for children and young adults remain widely unexplored. A few anthologies, which focus on the intersections of medical and literary representations and gender aspects within the representation of disease in adult’s literature exist (Gilman 1998, Reich-Ranicki 2007, Bender, 2009 von Jagow/Steger 2005 and 2009). Also gender aspects within the representation of disease in adult’s literature (Nusser/Strowick 2002, Kottow 2006, Käser/Schappach, 2014 or: Zwierlein 2014) as well as studies on the metaphorical potential of serious diseases within cultural and societal discourses (Spackman 1989, Sontag 2002 or Strowick 2009) have been the focus of academic research. In addition there exist numerous studies on the representation of specific diseases in selected literary works. However, aside from disability-studies on deviance and rare journal-issues on the depiction of disease and/or deviance within the field of children’s and young adult’s literature (JuLit 1996/1, Buch&Maus 2014/1, Children’s Literature Association Quarterly 2013/3 or KJL&M 2014/3) larger scientific studies that include both fields are still missing. Even the recent phenomenon of the so called Sick-Lit is only fragmentarily highlighted by online newspaper platforms. Julie Elman’s study Chronic Youth (2014) is an exception. However, she mainly focuses on as Teen Sick-Lit labelled texts from the 1980s that “continually emphasize the undesirability of disabled bodies, juxtaposing the grotesqueness of the diseased body and its medical management against healthy, natural, and attractive (able) bodies” (Elman 100), and not contemporary texts like Green’s and others which provide a rich potential for literary research. This anthology therefore not only aims to fill a gap within the research of children’s and young adult’s literature, it also responds to actual trends and provides suggestions for further research.

As already mentioned, the radical change in the representation of disease and deviance in recent children’s and young adult literature inspired us to organize an interdisciplinary conference, titled: Sick [sic!?] Sickness in Media for Children and Young Adults. In April 2014 we discussed (at the Institute for Research on Young Adult Literature at Goethe-University, Frankfurt/Germany) the multiple changes in the depiction of sickness and deviation and new meanings that are linked to these representations in children’s literature and media. As narratives of sickness and deviance are very complex, this topic opened up a broad spectrum of discussions. In order to include a preferably inclusive approach, we defined sickness in its broadest sense and with reference to Michel Foucault not as ‘unhealthy’ but outside of what has been defined as (bodily and mentally) normal. Representa ← 13 | 14 → tions of physical and mental illness (whether in a direct or in a figurative sense) as well as physical and mental disabilities were included2.

The Anthology

Many articles in this anthology have originated in the talks from the conference. However, to widen the spectrum of represented narrations of deviance and sickness, additional papers have been added. In the first chapter JEAN WEBB offers an interdisciplinary approach. She discusses the depiction of disability, sickness and health in the works of F. H. Burnett, taking into account the medical-historical developments in Great Britain during the second half of the nineteenth century. The second chapter traces the relationship of adolescence and psychological disease. IRIS SCHÄFER offers an insight into recent young adult novels featuring male protagonists suffering from mental illness. By looking at the medical history of hysteria several similarities but also continuous changes come to light, that show how disease diversifies with the societal framework. ANNA STEMMANN uses a topographical approach to illuminate the connection between adolescence, schizophrenia and space, specifically the edge of the town, the young protagonist(s) of Nils Mohl’s Es war einmal Indianerland (2011) move in. In JANA MIKOTA’s and MAREN SCHEURER’s elaborations, adolescence is of importance mainly as a time of bodily transformations. Both authors discuss anorexia neurosa as a way to regain control over the body. Mikota does so by giving an overview of the dominant themes in a wide selection of young adult novels, while Scheurer looks at the visualization of the affliction in Katie Green’s graphic novel Lighter Than My Shadow (2013). Chapter three focusses on two very different forms of paternalisation and the problem of agency. KATHARINA FÜRHOLZER investigates the status of child patients, who are unable to make decisions regarding their own body. This discussion is enhanced by an analysis of The Brothers Lionheart (1973) and the stance Astrid Lindgren’s novel takes regarding child coping competence. ALAIN BELMOND SONYEM uses young adult literature about AIDS in Africa to speak out about the general narrative of despair and hopelessness that surrounds the construction of images of Africa. In this context the Western idea of Africa as a place that requires charity is critically revisited. In chapter four narrating deviance is discussed. ANIKA ULLMANN considers semiotics of deviance and illness and highlights the impact the protagonist’s status as a patient has for the value statements of The Terrible Thing That Happened to Barnaby Brocket (2012). ROBIN ← 14 | 15 → SCHMERER offers a look at the television series Glee. By discussing a selection of episodes he draws into question how Arty’s disability is used as a plot device. Chapter six focusses on Sick-Lit. SIMONE WEISS gives an introduction into the topic by comparing literary presentations of three different illnesses: the plague, AIDS and cancer. FRANZISKA PITSCHKE engages in a detailed discussion of the terminology of war used to describe dealing with illness, especially cancer, and shows how recent Sick-Lit depicts the sick protagonists’ engagement with these images of battles and heroes. NINA HOLST traces aspects of John Green’s double status as a writer and a critic, by analysing the relationship of authorship, meaning production and cancer in The Fault in Our Stars (2012).

In the last part, we attempt a thematic and historic overview on possible topics and recent development within the depiction of disease and deviance in media for children and young adults. Here, not only the themes, motifs and questions that emerged throughout the chapters are summarized, also their potential for further academic investigation will be highlighted.

Works Cited

Adomnicai, Irina. Corps Malade et Adolescence. Paris: In Press 2004. Print.

Bender, Niklas. Kampf der Paradigmen. Die Literatur zwischen Geschichte, Biologie und Medizin, Flaubert, Zola, Fontane. Heidelberg: Winter 2009. Print.

Bloss, Peter. On Adolescence. New York: Macmillan 1966. Print.

Elman, Julie Passanante. Chronic Youth. Disability, Sexuality, and U.S. Media Cultures of Rehabilitation. New York and London: New York University Press 2014. Print.

Erikson, Erik H. Identity. Youth and Crisis. London: Faber 1974. Print.

Foucault, Michel. The Birth of the Clinic. An Archaeology of Medical Perception. Transl. A.M. Sheridan. Taylor & Francis e-Library 2003. Ebook.

Gilman, Sander L. Disease and Representation. Images of Illness from Madness to AIDS. Ithaca and London: Cornell 1988. Print.

Habermas, Tilman. Zur Geschichte der Magersucht. Eine Medizinpsychologische Rekonstruktion. Frankfurt am Main: Fischer 1994. Print.

Honnor, Jessica. “Illness in YA Fiction. Do Authors Go Too far, or Not Far Enough?” on The Guardian Online. Aug/16/2015. Web. (last accessed Mar/21/2016).

Käser, Rudolf/Schappach, Beate (eds.). Krank Geschrieben. Gesundheit und Krankheit im Diskursfeld von Literatur, Geschlecht und Medizin. Bielefeld: Transcript 2014. Print. ← 15 | 16 →

Kottow, Andrea. Der Kranke Mann. Medizin und Geschlecht in der Literatur um 1900. Frankfurt am Main: Campus 2006. Print.


ISBN (Hardcover)
2017 (März)
Frankfurt am Main, Berlin, Bern, Bruxelles, New York, Oxford, Wien, 2016. 295 S., 5 s/w Abb.

Biographische Angaben

Nina Holst (Band-Herausgeber:in) Iris Schäfer (Band-Herausgeber:in) Anika Ullmann (Band-Herausgeber:in)

Nina Holst teaches at the Department of English and American Studies at the Goethe University in Frankfurt. She researches representations of networked subjectivity in literature, film and television. Nina Holst lehrt am Institut für England- und Amerikastudien der Goethe-Universität in Frankfurt. Sie erforscht Repräsentationen von vernetzter Subjektivität in Text, Film und Fernsehen. Iris Schäfer studied German and Compa-rative Literature in Frankfurt and London. She teaches at the Institute for Research on Young Adult Literature at Goethe-University in Frankfurt. Her research interests include diseases in young adult fiction. Iris Schäfer studierte Germanistik und Komparatistik in Frankfurt und London. Sie lehrt am Institut für Jugendbuchforschung der Goethe-Universität in Frankfurt. Ihre Forschungsschwerpunkte liegen im Bereich von Krankheitsnarrativen in der Jugendliteratur. Anika Ullmann is a PhD student at the Leuphana University Lüneburg. Her research focuses on transgression, age and morality in young adult hacker novels. Anika Ullmann promoviert an der Leuphana Universität Lüneburg. Sie erforscht die Zusammenhänge von Transgression, Alter und Moral in Hackerromanen für Jugendliche.


Titel: Narrating Disease and Deviance in Media for Children and Young Adults / Krankheits- und Abweichungsnarrative in kinder- und jugendliterarischen Medien