Autistic autobiography or autistic life narrative?
Irene Rose [1]
The article offers an overview of autistic autobiography and suggests that, when studying disability life narratives, attention to the relations of production will help to assess the importance of traditional autobiographical texts in facilitating attitudinal change. Exploring the notion of relationality, the article argues that intertextual references within a substantial segment of autistic autobiography render the corpus testimonio. As such, autistic life narratives exceed the individualisation of autobiography, asserting a communal response through the repetition of similar experiences represented across a variety of autistic life narratives. This corroboration inverts power relations by attesting to the ordinariness and intentionality of autistic action, actions that in other sites of articulation would be pathologised and dismissed. The article also demonstrates how the unusual material conditions of publication afford people with autism a unique opportunity to convert autobiographical ‘truth’ into autistic authority, as autobiographers go on to author instructional texts based on the validation of their autistic experiences.
Introduction
People with autism have been committing their life experiences to print for over 20 years and since 1986 there has been a significant growth in the publication of autistic autobiography. Using the criterion of personal accounts of autism accredited to a single author, a recent survey found that there are more than fifty autistic autobiographies in print (see Baggs Autistics.Org for a full list).[2]
To investigate how autobiographical acts symbolically interact with the world, as Smith and Watson note in their guide to reading autobiography, it is useful to recognise autobiographies as “life narratives” (3). The term encompasses “many kinds of self-referential writing that make use of the components of the autobiographical act [namely] memory, experience, identity, embodiment, and agency” (3). As such, life narratives include traditional autobiography, but work to unseat the master narrative of the “sovereign self” that traditional autobiography elevates. The concept thereby recognises a wide variety of autobiographical textual forms and prompts investigation into the component parts of autobiographical acts and the cultural sites and structures that motivate their telling (50).
The term life narrative also resonates with Paul John Eakin’s concept of “narrative identity”. Eakin uses this concept to denote the intimate link between autobiographical narrative and identity formation, observing that “narrative is not merely a literary form but a mode of phenomenological and cognitive self-experience” (100). Recognising that how people may narrate their selves is determined by how society perceives that selves are brought into being, Eakin calls for eschewal of the potentially misleading distinctions that presuppose a monolithic self, unproblematically re-presented in narrative. Instead he recommends a model that posits that identity at once contains and is constituted by narrative in a mutually reinforcing relationship.
“Life narrative” and “narrative identity” are particularly useful concepts to apply to autistic life writing, as they not only draw attention to the efforts to construct a coherent narrative self that is static and open to communication through normative modes of expression, but also recall the occasions and sites that motivate this articulation. As autistic advocate and activist Amanda Baggs notes on her website “Getting the Truth Out”: “Sometimes, while barely (if at all) able to perceive my surroundings, move, perceive the passage of time, react, or some combination of those things, I laugh in my head at the contrast between my life and the way people online pretend to themselves that my life goes.” Echoing this sentiment, Eakin notes that autistic life narratives testify to the difficulties for people with autism of participating in the interpersonal exchange that fosters narrative identity (129). He is nonetheless keen to stress that the ‘achievement’ of narrative identity does not suggest that the narrativized self is coextensive with, or a prerequisite for, a claim to selfhood. Referring to Ulric Neisser’s fivefold model of selfhood, Eakin suggests that narrative identity refers only to the concept of self and experience that can be narrativized.[3]
Interestingly, autistic life narratives can work not only to ‘reveal’ selves presumed absent but can conversely work to destabilise the presumed-desirable normative self. In exposing the ceaseless hard work and elaborate preparations required of people with autism to present a normative concept of self for the purposes of trying to assimilate themselves into neurotypical society, autistic life narratives can call into question the demands of the socially sanctioned and constructed self that requires such exhaustive efforts. Autobiographer Dominique Dumortier writes, “When they read this book my friends and acquaintances may not immediately recognise it is about me. I have become an expert at hiding difficulties caused by my autism” (back cover notes). Along similar lines, Dawn Price-Hughes notes, “Sometimes reaching out and communicating isn’t easy–it can bring sadness and regret. Some of my family and friends, after reading the manuscript for this book, were deeply saddened to learn how I experienced my world” (179). In most autistic accounts, the narrative cohesion and stability represented by the text works in tension with the narrative content that describes a multitude of daily difficulties due to differences in autistic perception.
Using autistic life narratives as the designated term for autistic textual self-representations can remind us of what is at stake in discussions of this corpus. For people labeled as cognitively different, the concept of life narratives extends beyond James Olney’s recognition of a shift “from a focus on ‘bios’ or the course of a lifetime, to focus on ‘autos’ the self writing and being written” (xv). Indeed, it goes further in allowing account to be taken of what can be written under certain linguistic, textual, narrative and social conditions. Writing the self–any self–is a socially constructed and constrained act, as Kenneth Gergen asserts, where reporting one’s memories “is not so much a matter of consulting mental images as it is engaging in a sanctioned form of telling” (90). In recognition of the socially constructed nature of the act of self narration, I will contend that scrutinizing the structures of publication that sanction autobiographical narratives can provide both interesting and significant context to these texts, and that a particularly appropriate methodology involves employing the concept of relationality.
Relationality
The idea of relationality in life-writing was initially identified by Susan Stanford Friedman in 1985, as noted by Sidonie Smith and Julia Watson, in the designation of “relational autobiographies” as a suitable model with which to conceptualize self-hood in women’s autobiographical writing. Friedman argued that women’s narratives assert a “sense of shared identity with other women, an aspect of identification that exists in tension with a sense of their own uniqueness” and furthermore that this tension exists across “fluid boundaries between self and an Other or others” (qtd. in Smith and Watson 201). In 1999 Eakin develops this notion of relationality, attesting that all assertions of identity are relational because as “the assertion of autonomy is dependent on [the intersubjective] dynamic of recognition, identity is necessarily relational” (52 original italics). Eakin further asserts the import of theoretical attention to relationality, declaring that “relational identity confounds our familiar literary and ethical categories; both need to be stretched to accommodate the fluidity of selves and lives” (181).
In his study Eakin reformulates Sidonie Smith’s analysis of autistic subjectivity as a limit case for autobiography, asserting that autism offers a test case for “the formation and maintenance of identity as we know it” (127). Following Neisser’s fivefold model of self, Eakin suggests that Smith’s speculations about the unknowable interiority of autistic people may be “extended to all subjectivity” (127). Citing Temple Grandin and Donna Williams’s accounts of the difficulties of social interaction and participating in the interpersonal exchange that fosters narrative identity, Eakin suggests that autistic subjectivity may resemble neurotypical subjectivity only without “the cultural overlay of linguistic and narrative socialization” (127). He suggests, furthermore, that however feasible, such a possibility is difficult for neurotypicals to imagine precisely because recall of that subjectivity lies irretrievably buried beneath the ground of our “linguistically, narratively constituted knowing” (127).
Leaving his observations of autistic autobiography there, Eakin moves on to concentrate on aspects of relationality pertaining to autonomy, privacy, moral agency and the law with respect to the ethics of life writing that involve collaboration or the representation of what he terms “proximate others–parents, children, siblings, or other intimates” (176). However, revisiting Friedman’s notion of relationality and the capacity of the term to encompass all seemingly autonomous acts holds particular significance for the analysis of autistic life writing. Acknowledging the tension inherent in the simultaneous functioning of the individual and collective in life writing, Friedman’s definition allows space for consideration of the material conditions of the publication of autistic life writing and the reader’s acknowledgement of those conditions. This can usefully account for the changes in autistic self representation in life narratives and in the concomitant change in societal attitudes toward autism.
The Discursive Potential of Autistic Life Narrative
As a written form of social communication that requires self awareness, projection, imagination, organisation and reconstruction, as well as the ability not only to recognise others, but also to wish to communicate and interact with others, at every juncture, life writing contradicts the simple yet wide ranging DSM-IV diagnostic criteria for autistic conditions (A.P.A.). The very existence of autistic life writing exerts the potential to radically destabilise the authority of the diagnostic process and the institutions that obtain and gain coherence from their power through this process. Indeed, it was the recognition of the contradictory nature of autistic life narrative, and the inherent destabilising potential of its existence, that led Oliver Sacks to declare on the cover of the revised edition of Temple Grandin’s autobiography Emergence: Labelled Autistic that it was ‘in a way, an unthinkable book’.
The proliferation of autistic life narratives and the content of the lives they recount vividly flesh out and validate the lives of autistic people. In the space of ‘otherness’ that a diagnosis of autism can represent, these narratives work at a connective emotional level to resist the pathologisation of difference. In the words of one title, they collectively work to redefine normal as they erode the perceived boundaries of discursive normality (see Davis). Thus, whereas the DSM-IV determines autism to be diagnosed where there is a triad of impairments of social interaction, communication and functional behaviour, the increasingly wide ranging and diverse personal accounts of the condition resist the constrictive de-humanising pathologisation of this symptomatic diagnostic criteria (Atkinson and Walmsley; Molloy and Vasil; Waltz “Reading”). Curiously, although G. Thomas Couser named the genre of disability and illness life writing “autopathology” (“Recovering” 5), which etymologically denotes “self-disease writing” or “self-writing about disease”, the term, as he acknowledges in correspondence with Smith and Watson, is in fact deployed to denote texts that are “anti-pathological” (187). Noting that “in my experience the impulse to write a first-person illness narrative is often the impulse to depathologise one’s condition”, Couser has suggested that the term “antipathological” be applied to life narratives that write back against cultural discourses that stigmatize and pathologise the authors (qtd. in Smith and Watson 187). Furthermore, Couser asserts that the important function of life writing is to let impairment be represented as a fact, as a ‘living condition’, not as a trope or metaphor (see Waltz “Metaphors”). Indeed, he goes on to suggest that it is through life writing that the impairment and its subsequent disability may be seen not only as culturally constructed but as constructive of a distinctive culture (“Empire” 306).
Having concluded (in “Empire”) that the unsurpassed opportunity for self representation that life narrative offers still makes the endeavour worthwhile, in a subsequent article Couser reinforces his reservations about optimistically celebrating the accessibility of traditional self-authored life narrative presented as autobiography. He acknowledges the inevitability of any text having to capitulate to the demands of narrative form and the dominant mode of representation (“Conflicting”), and suggests that the “tyranny of the comic” and “triumph narrative” and the demands of entry to, and imperatives of, the marketplace disadvantage differently abled authors (“Empire” 308). He developed this premise further, concluding that four recurrent rhetorics that reinforce conventional attitudes were discernible in antipathological life-writing–namely, triumph, horror, spiritual compensation and nostalgia (“Conflicting” 79).
The frequent occurrence of these dominant narrative modes in autistic life narratives is one well recognized by those who are related to, or are otherwise in contact with ‘ordinary autistics’ (Adams).[4] Couser’s skepticism of rhetorics of reinforcement was reflected by the delegates at the Autism and Representation Conference (2005) held by the Society for Critical Exchange in Cleveland, who, voicing their rejection of the narrow dictates of personhood constituted through the acquisition of language, questioned the capacity of linguistic narrative forms to appropriately communicate the subjectivities of ordinary autistics. Intuiting that the burgeoning genre of “spectrum publishing” (Adams) was pandering to the tastes of the reading public, they succinctly summarized their skepticism toward this trend and the ‘inherent’ contradiction of autistic life writing as “no success, no story.”
Indeed, given the acknowledged ‘exceptionality’ of autistic life writing, it is imperative to ask, paraphrasing Couser, to what extent, and through what processes, can disability life writing pose a significant challenge to the “empire of the normal” in what Lennard J.Davis has called “the United States of Ability”? (“Empire” 306). I argue here that awareness of the relationality of autistic life writing, and the recognition of its corollary status as testimonio and attention to the material relations of the production of these texts is particularly useful in assessing their social significance.
While still allowing for the limits of dominant rhetorical forms, in 2001 Couser builds upon the potential of considering disability life narrative as “autoethnography”, a means by which maligned subjects undertake to represent themselves in ways that engage with the dominant discourses of society (“Conflicting” 88). Invoking John Beverly’s definition of testimonio as a useful analytical tool, as it is a “form, told in the first person by a narrator who is also the real protagonist, or witness of the events he or she recounts, and whose unit of narration is usually a ‘life’ or a significant life experience,” Couser notes that the narrator of testimonio writes with the intention of communicating the situation of a group’s oppression or struggle (92-93). Moreover, the term recognizes the author’s claim to agency in the act of narrating and calls upon readers to respond actively in judging the crisis. Furthermore, the primary concern of testimonio is sincerity of intention, not the text’s literariness (94), an intention that in autistic autobiography is supported by editorial decisions that have allowed distinctly non-rational ontological experience to be included –and therefore validated–in some autistics’ texts. This is most notable in the narratives of Donna Williams and Kenneth Hall, as I will discuss later in the article. Finally, the ideological thrust of testimonio is recognized as the “affirmation of the individual self in a collective mode” (97). Thus, the term testimonio, like Friedman’s relationality, recognises that the personal narrative of life writing has both an individual and a collective function that co-exist in a dialectical relationship. As such, testimonio recognizes life narrative as a site that articulates the relationship between individual experience of the personal markers of a singular life, and communal experience as a collective record of such personal experiences that cohere around the adoption or designation of a common, agreed term of identification.
I contend, therefore, that the collection of texts that comprise the corpus of autistic life narratives is now such that it enacts a community response to the individuation of impairment, as each text enacts Couser’s antipathological impulse to write back against the more restrictive discursive limits of being diagnosed as autistic. As Dorothy Atkinson proposes, self reflexivity is the key requirement for life narratives to move from the individual to the communal. In recognising and acknowledging a wider community, a collectivity of personal narratives can thus create an intertextual alliance that guards against what David T. Mitchell has termed the “body solitaire” of disabled autobiography, the reified singular success story typical of disabled representations. In the corpus of autistic autobiography there are many instances that create an intertextual alliance to enact a community response, for example; Thomas McKean (1994) mentions two autobiographies –Temple Grandin (1986) and Sean Barron (1992); Temple Grandin (1995) references two autobiographies–Donna Williams (1992), Thomas McKean (1994)–and three collaborative texts–David Eastham (1990), Berger Sellin (1995) and Sean Barron (1992); Jasmine Lee O’Neill (1998) recommends two autobiographies for further reading–Donna Williams (1992) and Temple Grandin (1995); Edgar R. Schneider (1999) references Temple Grandin (1995); Stephen Shore (2001) references three autobiographies –Temple Grandin (1995), Donna Williams (1992) and Liane Holliday-Willey (1999) and Sean Barron’s (1992) collaborative account; Luke Jackson (2002) references three autobiographies -Temple Grandin (1995), Liane Holliday Willey (1999) and Kenneth Hall (2001); Jen Birch (2003) references two autobiographies–Temple Grandin (1995) and Liane Holliday Willey (1999) with three different texts recommended for further reading (Sean Barron (1992), Edgar Schneider (1999) and Donna Williams (1994)) and Dawn Prince-Hughes (2004) recommends three autobiographies for additional reading Temple Grandin (1986 and 1995) and David Miedzianik (1986) [out of print] (for a full list of texts see Baggs Autistics.Org).
In this way, far from being the “co-ordinates of a singular subjectivity,” autistic life narratives are what Couser has termed “first person plural accounts” with texts performing autoethnographic functions of both foregrounding the roots of identity in disability and resisting or undermining objectification by some presumptive medical or medicalizing authority” (Mitchell 311; Couser “Empire” 309). In the proliferation of intertextual referencing that pervades autistic accounts, autistic life narrative not only surpasses the self reflexive criteria of representational community narrative, but also empowers individuals as authoritative experts through peer recognition. In this sense, then, it is appropriate to refer not only to “autiebiography” but also to “autie-ethnography” as it is in the identification with autism that the autoethnographic possibilities of autistic life narrative are played out.[5] However, as I have argued, in recognising the political import of these life narratives and to retain the significance of the texts’ recounting of group oppression and the need for an active reader response, autistic testimonio remains the more suitable term.
Narrating Difference
While autistic self-narrators may recount divergent and contradictory views, as members of the wider autistic community they will cohere as a group, communicating the experience of disabling practices based on the experience of the perceptual differences of autism. Furthermore, as the knowledge of the disparate yet cohesive experiences contained within the corpus spreads, the genre becomes more robust, capable of fending off the dismissive descriptions of ‘exemplary-individual-texts-that-are-exceptions-to-the-rule’, and showing instead that autistic testimonios are, rather, indicative of the complex subjectivity within every autistic person, oral or not. This projection works not only to confirm the presence of Neisser’s five modes of self, but also to validate these states of self as self. Autistic life narratives confirm Daniel Stern’s assertion that some sense of self exists long before a sense of self-awareness and language acquisition. For example, Donna Williams’s four-part autobiography recounts her experiences of acquiring increasingly normative subjectivity. In the second instalment Somebody Somewhere published in 1994, she recounts an episode in her late twenties where she goes through what is recognisable as the Lacanian mirror stage. Upon moving into a new house she recalls, “I raced to the bathroom. I was in rapture. There, wall-to-wall, were mirrors of every description. I felt I was in paradise. I would need no-one. I was at home with ‘me in the mirror’ everywhere I looked” (197). It is only when challenged by her boyfriend that she is not in fact in the mirror that she consciously decides to try to let go of this illusion and in doing so triggers herself to move toward normatively integrated embodiment:
I had wondered what I wanted a body for. Now I knew. There was no greater feeling of self-security. This was the first security a baby knows long before it knows its mother. This was the first security in life, which has been missing. Connection with my body was the missing bridge across the impassable gorge that has stood between me and being touched with feelings.
However, as she summarises in 1998, having experienced and represented several states of self prior to this moment, her autobiographies testify to the fact that “the self exists before its separability from everything external to it” (“Sensing” 19).
Autistic life narratives also give credence to Stern’s proposition that pre-verbal senses of self may start to form before birth. Ten year old Kenneth Hall’s life narrative contains a short section subtitled “My Memories So Far: Before I was Born”, in which he recalls the experience of being in the womb and even has memories from before his birth (17). Indeed, autistic accounts are notable for portraying the experiences of all Neisser’s five types of self. In particular, they acknowledge and represent the logic systems of both the ecological and the interpersonal self that, as Eakin notes, are outside the conscious recall of neurotypicals (102).
In Autism and Sensing: The Unlost Instinct Williams reflects upon her life experiences to represent her autistic subjectivity in comparison to neurotypical subjectivity. Although never referring to Neisser, Williams’s argument describes just how the condition of difference that is autism may well be the presence and persistence of several of Neisser’s kinds of self at once. Explaining how the simultaneous presence of different states of self influences autistic perceptual awareness, Williams explores the selves she experienced while acquiring a learned “system of interpretation” (12). Although Williams uses descriptive rather than clinical terms, it is clear that her description reflects the types of self in Neisser’s hypothesis. Williams’s “self less self” or “no self, no other” (25) is recognisable as Neisser’s ecological self, her “all self, no other; all other no self” (28) is a fluctuating experience of Neisser’s interpersonal self while “simultaneous self other” (30) is a mix of the extended and private self, with the learned “system” being Neisser’s conceptual self.
The complex connections between the ability to narrativise the self and identity are, as I have noted, the subject of Eakin’s work, examining how narrative plays a key role in informing dominant ideas of how personhood can be accredited to individuals. However, as the accounts of different states of self are repeated across a range of autobiographies, they serve to corroborate one another and in doing so, strengthen the need for expanding our notions of human subjectivity and the grounds upon which we grant personhood. As Sidonie Smith asserts, if autism is a metaphor through which unknowable subjectivities, by being designated a clinical name, become culturally intelligible, then autistic autobiography continually works against the discursive limits of this cultural inscription (231). Furthermore, she notes that as the experiential self will always exceed the diagnostic “autistic” self, the excessive subjectivity of autistics’ lived lives assumes authority (242). In this way I would suggest that autistic autobiography, as the textual representation of that excess, demands the reassessment of the liberal humanist self to widen our concepts of the human subject.
In engendering this demand, the continued publication of self-authored narratives of ‘exceptionalised’ autistic experience renders the entire corpus of autistic life narratives testimonio. Situating the ordinariness or dailiness of being autistic back into what dominant neurotypical ideology deems ‘unknowable’ for being out with the discursive recognition of the modernist rational self, autistic autobiographies enact a validation of the ways of being they recount. They simultaneously demand recognition of the different, yet none-the-less entirely human, autistic experience. Writing through and back to the diagnostic category autism, the content of these life narratives realize testimonio’s intention of communicating the situation of a group’s oppression or struggle through constant reflection upon the social and cultural codes and discourses of normative being. Additionally, as Williams suggests, this reflection is imbued with either an implicit or explicit critique of the cultural and social norms of the neurotypical world: “I took my cues from what everyone else was doing…I had no idea how to conduct my self socially” (Somebody 66). “Humanity is basically nothing but a big enigma to me,” writes Thomas McKean; “[t]here are many ways that people communicate and many things that they do while they are together that simply make no sense to me” (50). “Deep down inside me,” writes Gunilla Gerland, “I sometimes get so tired–you have such complicated rules in your world! And all the time I have to think and think and think about them” (255).
Importantly, when reading of the neurotypical world’s infinitely complex rituals of social interaction from an autistic perspective, the autistic person’s decision to give up on trying to fathom the rules, to settle for appearing eccentric or to remain non-verbal, is presented as a pragmatic decision: “I don’t have to be you!! I don’t have to smile when you’ve done something inane. I don’t have to pretend to go along with the flow if it is drowning me. I can choose to turn around and leave this situation the moment it upsets me, and you should respect my decision to do so!” (Holliday Willey 90). Given that learning these skills requires exhaustive efforts for indeterminate reward, it becomes obvious from the readers’ perspective that it would be more humane for dominant neurotypical society to be more open and flexible to accommodating difference. Indeed, it is bringing this perspective to wider public attention and to help other autistics like themselves negotiate social interaction that is a substantial motivator for autistics to write their autobiographies in the first place (Kingsley). As Luke Jackson, teenage author of the Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence notes, he hopes that in writing his book he will have answered the questions that other autistic adolescents are asking and helped parents and carers to understand their children more (13).
Significantly, in the corpus of autistic autobiography the act of writing difference through testimonio is lent additional authority through its unique relations of production within the field of autopathography. Through these unique relations, the excessive autistic experiential self, noted by Smith, has been enabled to substantially contribute to the discernible change in attitudes toward people with autism that has taken place over the past twenty years.
The Relations of Publication
For any scholar working within the large and disparate subject area of autism studies Jessica Kingsley Publishers (JKP) is synonymous with the field, and attention to this presence changes the nature of the analysis that can be brought to bear on autistic life narratives. In its twenty-first year, JKP was awarded both the Taylor Wessing Academic Publisher of the Year award and the overall prize for the Van Tulleken Independent Publisher of the Year. Starting with a bank loan of £5,000 in 1987, the company has grown exponentially, turning over £3.5m in 2006 and now publishing one hundred books a year (Tivnan).
When asked why she has been so successful, Kingsley puts it down to “a very focused publishing list and the policy that if they can’t see who is going to buy the book, then they don’t publish it” (Tivnan). Although this statement echoes Couser’s pessimism about the marketplace, it is noteworthy that Kingsley goes on to state that her success is due not to pandering to the market but to being bold and astute enough to lead the market in new directions. Declaring that she set out to “change people’s perception [of Asperger’s syndrome] by presenting the positive side of the condition,” she acknowledges that the company have “a good enough reputation now to go to slightly more alternative stuff” (Tivnan). Kingsley indicates this move by acknowledging the publication in 2006 of Finding a Different Kind of Normal: Misadventures With Asperger Syndrome by Jeanette Purkis, the story of a lesbian with Asperger's syndrome who gets duped into taking part in a bank robbery and finds herself framed for the crime (Adams).
However, a closer inspection of JKP’s back catalogue reveals nearly ten years of publishing ‘alternative stuff’ marked by the publication of Williams’s Autism and Sensing in 1998. Moreover, Kingsley has grown her business through knowing and listening to all aspects of her market and working to publish accessible texts that will strengthen understanding among people with autism, their families and friends, practitioners and medical professionals. Having the advantage of owning her company outright, and therefore never having to justify her decisions to a board of directors, Kingsley has, and uses, the ability to publish what she thinks ought to be published (Kingsley). Exercising this right on more than one occasion, Kingsley has purposefully built a robust bond of trust with her readership that has enabled her to take editorial decisions to include, and therefore validate, more ‘irrational’ aspects of cognitive difference and perception. Kingsley’s decision to publish Autism and Sensing, Williams’s thesis on autism as the simultaneous presence of different perceptual selves is the most notable example. An advocate for communicating all aspects of autistic experience, Kingsley has also published the work of young narrators such as ten-year-old Kenneth Hall, thirteen-year-old Luke Jackson, and the adolescent school diaries of Jessica Peers, published when she was twenty-five years old.
On reviewing Kingsley’s catalogue it is clear to see that her commitment to emancipatory publishing has been realized through her promotion of the relationality of expertise and knowledge. As well as publishing Tony Attwood's Asperger's Syndrome: A Guide for Parents and Professionals, which has sold more than 400,000 copies since 1988, Kingsley now publishes over forty percent of the available autistic autobiographies and at least three of her autobiographers–namely, Donna Williams, Wendy Lawson, and Liane Holliday-Willey–have gone on to pen institutionally recognized practitioner guides. It is my contention that the presence and success of these three autistic experts is due to Kingsley’s presence as an advocate publisher. Although there may have always been the authorial desire to write, it has taken Kingsley’s presence to not only cultivate that desire but also to orchestrate the texts reaching the academic market, the market most capable of influencing clinical and cultural change.
Kingsley takes her dual roles as successful, professional publisher and ethical advocate publisher equally seriously. Stating that she perceives prurience as a substantial motivator of wider public interest in autobiographies of cognitive impairment she avoids courting the trade (public) market by pricing the autobiographies that she publishes for the academic market (Kingsley). Although the existence of overriding public prurience is debatable, nonetheless perceiving its presence Kingsley takes precautions to minimize exposure to such unwanted interest. In 1998 when she acquired the rights to Williams’s books Kingsley eschewed pursuing the populist success experienced by the original publishers through deliberately re-pricing the texts out of the trade market. Indeed, it is notable that the care she takes in choosing and marketing her catalogue of texts is what has helped to build Kingsley’s reputation as an exemplary accessible academic publisher and has gained her the trust and respect of both her professional and public readership.
The trust Kingsley has engendered across her readership is symbolically enacted by the publication in 2006 of the inclusively titled Voices from the Spectrum: Parents, Grandparents, Siblings, People with Autism, and Professionals Share Their Wisdom. The text exemplifies the wider egalitarian epistemological ethos of Kingsley’s publishing empire as it encompasses a myriad of “locational sites of story telling” between its covers within a purposefully equitable relationship (Smith and Watson 56). Furthermore, the text enacts Eakin’s assertion that all identities are necessarily relational due to the dynamics of recognition (52). Indeed, as a unique collection of disparate community perspectives, the text stretches generic categories to recognize and “accommodate the fluidity of selves and lives” (Eakin 181), situating as it does all of these lives within the autism spectrum. Additionally, the text indicates the wider relational conditions of ‘truth’ and ‘authority’ within autistic life narrative and biographical accounts.
As Smith and Watson note, in normative life narrative, for the recognition of the narrative’s purpose to make “truth claims,” life narrators are required to “anchor their narratives in the dominant culture’s temporal, geographical and cultural milieux”(9) and the pact is secured by convergence of the author and narrator’s vital statistics. However, it is interesting to note that in the commercial marketplace the publisher first and foremost, guarantees this convergence, as the publisher attests to the truth of the autobiographical signature. In the field of life narratives of cognitive and perceptual difference this would indicate that it takes a publisher with the experience, reputation and determination of Kingsley to push the boundaries of ‘acceptability’. For, in the readers’ expectation that they are going to read an ‘extra-ordinary’ account of a life beyond their own perceptual limits, it requires a resilient bond of trust to maintain the validation of sincerity necessary to sustain the position that what one encounters in these texts is in fact ‘true.’ Furthermore, in developing her authors Kingsley exercises her unique market position to enact a conversion of this ‘truth’ to ‘authority’.
What I am suggesting here is that authors who have published their life narratives with Kingsley have not only benefited from the advantages that a claim to narrative selfhood engenders, but due to the unique relations of production JKP offers, these authors have been enabled to achieve a uniquely positioned cultural authority and identity as autism experts. Notably, this authority is threefold, as the life narratives published not only demonstrate autistic authoritative excess, but due to niche marketing these texts gain affective authority through disseminating their presence of excess through the institutions of education that lend clinicians and other autism professionals their socially sanctioned authority. Finally, when these life narrators are then supported by JKP, who undertakes to publish the instructional texts they write, this affect gains the status of autistic expert authority capable of directly interacting with the authority of others, be it educational, clinical or medical. To this end I posit that the extent that the specialist niche publisher JKP has predicated a change in cultural attitudes toward people with autism and has worked to imbue autistic experience and perspective with equitable cultural authority is unprecedented in the wider field of autopathography.
Conclusion
Couser notes that, as Anne Hunsaker Hawkins has demonstrated, although it might be contradictory, it is not coincidence that the appearance of pathography coincides with the triumph of scientific technological medicine (9). Furthermore, as Peter Kramer bemoans, “Ours is an era of autopathography. Bookstore shelves groan with memoirs ...and no mental disorder [ ] is without its confessions” (qtd. in Couser Recovering 7). However, repudiating these texts and the demand for them as distasteful or ideologically normative, and therefore not affording them complex and considered attention, is to misrecognise their potential for agency. Noting as Smith and Watson do, that more work is needed on audience relations to autobiographical narrative (80), I contend that exploring the impact of the explosion in the publication of autopathography, and the public’s appetite for it, on audience attitudes toward the repetition and reinforcement of expected rhetorics may yield some interesting results. It is possible that the repetition and regular consumption of these modes at least in relation to a specific impairment and within the specific relations of production engendered by a niche publisher like JKP has actually created an audience appetite for innovation in these texts. Specifically, I argue here, that Kingsley’s presence and reputation as an advocate publisher have led her readership to expect textual innovations that deliberately exceed the discursive delimiting of diagnosis and demand the discursive space to explore and communicate different modes of being. For as Kingsley asserts, she only ever prints an autobiographical narrative that has something different to say, something that cannot be found elsewhere (Kingsley). It is my contention, therefore, that the combination of her market knowledge, her wish to lead the field, an acute understanding of what it takes to advocate through publishing and her readership’s continued support that has made Jessica Kingsley so successful.
Through a complex correlative of sites of motivation, production and consumption, I have argued that autistic life narratives have managed to defy the totalising constraints of discursive pathologisation of cognitive difference. I have suggested that attention to the cultural and material conditions of production can yield a more thorough understanding of the potential of such life narratives than previous methodologies have accounted for. I have also argued that to appreciate the political import of autobiography it should be recognised as life narrative and evaluated within its wider corpus to assess its potential as testimonio. Furthermore and importantly, I have asserted that in analysis attention should be given to the exigencies of the relations of production to account for the potential for discursive disruption offered to texts and authors to elude the rhetorical restrictions of autopathology and the discursive limits of diagnosis.
Notes
[1] Irene Rose, co-founder of the Cultural Disability Studies Research Network, www.cdsrn.org.uk, and Doctoral Candidate, Department of English and American Studies, University of Manchester.
[2] I would like to acknowledge my great debt to A. M. Baggs for compiling her list of autistic authors, booklist and facts, available at www.autistics.org. Tracing the whole range of autistic texts available would have proved very difficult without it.
[3] In Neissers’s expanded model of selfhood the five modes of self are: The ecological self: the self perceived in the physical environment (36); the interpersonal self: the self engaged in immediate unreflective social interaction with another person (41); the extended self: the self of memory and anticipation; recognition that this ‘I’ exists outside of this present moment (47); the private self: the self of “conscious experiences not available to anyone else” (5); the conceptual self: the self capable of producing diverse forms of self-information, categorization and theoretical models such as social roles, personality and theories of subjectivity and personhood like Neisser’s model.
[4] The quote from Mark Osteen in Adams is actually ‘normally autistic’, however while wishing to acknowledge the originator of the quote, following Davis (1995), I offer the alternative term ‘ordinary’.
[5] Zifendorf. “Autiebiography“ Everything 2 Weblog. 14 July 2002. Accessed 7 September 2005. <http://www.everything2.com/index.pl?node_id=1331484>.
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