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ABSTRACT
In order to examine the complexity of the autism memoir boom and its relation to the self-help ethos, we investigate published autie-biographies as part of a production cycle that has to negotiate between the demands of the individual’s unique story, the expectations of a community and a commercial rationale. More precisely, we focus on Jessica Kingsley Publishers (JKP), a leading international niche publisher in the field of neurological and cognitive differences. Firstly, we study the forms and formats offered by JKP as specific technologies of writing that affect the kind of identities that could be produced. Secondly, we focus on the ‘coaxing strategies’ that are used to streamline the life writing production. We investigate how JKP contributes to the proliferation of autie-biographies as well as to the creation of what Lauren Berlant has called ‘intimate publics’. Thirdly, we focus on the oeuvre of one of JKP’s star-authors, Donna Williams. By combining textual and paratextual analysis with qualitative data from interviews we will show how Williams exemplifies the quest and triumph ethos underlying the (commercial) disability memoir, while at the same time undermines and resists the notion of progress on different levels in her work.
Acknowledgments
The authors would like to thank Stijn de Cauwer, Kristien Hens, Gert-Jan Meyntjens and the anonymous reviewers for their incisive and stimulating remarks.
Disclosure statement
The authors do not have any financial interest or benefit arising from the direct application of this research.
Notes on contributors
Leni Van Goidsenhoven is a doctoral researcher of the FWO-Flanders at the Literary and Cultural Studies department at the University of Leuven, Belgium. She is preparing a PhD on autism and self-representation. She has already published several articles on this topic as well as on outsider art. Her research interests cover illness and disability representations, the institutionalisation of the self-help culture, autism and outsider art.
Anneleen Masschelein is Professor of Literary and Cultural studies at the University of Leuven, Belgium. In The Unconcept (SUNY Press, 2011), she studied the history of the concept of ‘the uncanny’ in the late twentieth century. Her current research focuses on literary advice culture and on contemporary cultural practices such as the literary interview and the stylisation of death in contemporary media society.
Notes
1 Autie-biography’ is a portmanteau word of ‘autism’ and ‘autobiography’. Importantly, the term has been coined by the autism community itself (Couser Signifying 5).
2 In what follows we will refer to this memoir as Colour.
3 The Relational model of identity is an approach to autobiographical writing that is radically different from and undermines the early theorising of autobiographical writing as a Western monologic genre produced by an autonomous individual, a subject completely knowable to itself. A relational approach to life writing does not emphasise the solitary of singularity, but the interactive aspect and the multi-vocality of a life narrative; the narrator’s story is mostly refracted through and in collaboration with the stories of others (Eakin 43; Smith and Watson 215–217).
4 In health sciences, Quality of Life is often measured with surveys. Often, such questionnaires assume that a disability diminishes the quality of someone’s life. Disability memoirs may demonstrate that this underlying assumption is wrong and discriminating. The quality of a person’s life cannot simply be graded on a numeric scale.
5 Several scholars responded to this critique by applying a particular set of reading practices that ‘de-individualize’ disability life narratives and have been convincingly reconsidered the role of life narratives within disability studies (Barrett). Some speak of ‘first-person plural accounts of disability’ (Couser The empire 309), others of ‘plural singularities’ (Torrell 321) or a ‘voice without subject’ (Mazzei 151).
6 In her book Giving an Account of Oneself Judith Butler considers the challenges of presenting oneself to others as a ‘recognizable subject’. Foucault’s later work on the practice of self-stylisation serves as the basis for Butler’s ethical framework ‘to continue in a dialogue where no common ground can be assumed’ (21). This is an interesting framework to approach disability and illness narratives, because the norms and conventions against which we all must, to a certain extent, define ourselves can have devastating implications for those whose disability or illness mark them as somehow outside the norm. Giving an account of oneself, using narrative and language, can already be very difficult for people living on the autism spectrum. Nevertheless, as Illouz stated, ‘narrative has become a key category to understand how selfhood is constituted through culture, how the self communicates with others, and how one makes sense of one’s place in a particular social environment’ (172). It seems that one is obliged to use narrative to prove that he or she has a self (see also Eakin). And indeed, only since the emergence of autie-biographies in the middle of the 1980s (e.g. Temple Grandin and Donna Williams) notions about autism, self and identity have begun to change.
7 The same strategy occurs in the JKP-series on ‘Writing for Therapy or Personal Development’ structured around star author/teacher Gillie Bolton.
8 Self-help books or guidebooks written by people on the spectrum are instructional texts with practical information about how to handle certain situations. They try to explain certain ‘autistic behaviour’ and give ‘exercises’ or ‘coping strategies’ to train yourself (or someone else) to deal with certain situations. Mostly they address other people living on the spectrum, as well as professionals, social workers, teachers and parents.
9 For more about the epidemic rhetoric and autism metaphors, see Masschelein and Van Goidsenhoven.
10 Paratext refers to all texts related to a (literary) work, but which do not form a part of it, e.g. the title, preface, blurb, genre category, etcetera. The paratextual elements influence the way a text is being read and interpreted. There are different kinds of paratext. The (1) peritext can be situated in the space around the text (i.e. title, preface, words of thanks, etcetera) The (2) epitext is related to a specific work, but doesn't occur in the same domain (i.e. reviews, marketing and promotional strategies, publishing policies, etcetera) (Genette 16).
11 For more about the pros and cons of the emerging of digital life writing and online autistic communities, see Masschelein and Van Goidsenhoven.
12 The most recent development in her writing is triggered by a diagnosis of metastatic breast cancer: http://blog.donnawilliams.net/2016/11/18/on-living-dying-and-metastatic-breast-cancer/#more-8145
13 The emergence and availability of an ‘autistic identity’ is visible through the corpus of autie-biographies that generated, for instance, a lexicon which developed tools of identities, think of words as ‘autie’, ‘autistic cousins’, ‘neurotypicals’, etc.
14 The preference for written rather than spoken communication is expressed many times among people living on the autism spectrum, see for instance: Holliday Willey (35), Prince-Hughes (26), Lawson, (97) and Baggs (n.p.).
15 In ‘Author and Image of the Author in Discourse Analysis’ Maingueneau distinguishes between three dimensions of authorship: the author-respondent, the author-actor and the author-auctor. The first dimension is linked to the discursive instance that signs the text. The second dimension relates to the role of writing in somebody’s life and the third dimension, that of ‘author-auctor’ is the notion of writer as a public and professional identity.
16 Another aspect of her public identity is that the author-function shifts from memoir author to therapist and teacher. On a narrative level, when the narrative is at certain points interrupted to include objective information about coping strategies, such as the coloured lenses (Colour 158), specialised information about the use of supplements and vitamins to control allergies and metabolic difficulties (138), or reflections about disability and society (232). In these passages, the emphasis shifts to sharing information and teaching, and the autie-biography comes close(r) to the self-help book.
17 As Rosemarie Garland-Thomson writes: ‘Only through shifting my understanding of my disability as an identity category accorded recognition, rights and equal access to opportunity under the principles of egalitarian government at its best could I and other people with a wide spectrum of disabilities act and be in the world outside of a deficit model of existence’ (Garland-Thomson n. pag.).
18 Rober McRuer introduced ‘compulsory able-bodiedness’ in parallel with the apparent coherent category of heterosexuality that posits queerness in terms of abnormality. Able-bodiedness, McRuer argued, produces disability and posits it in terms of lack and imperfection. Able-bodiedness is, like heterosexuality, unspecified and disembodied, it is masqueraded as a non-identity, as the natural order of things. But this condition which appears as normalcy is in fact compulsory (1–2).