Axon: Creative Explorations

Keywords: memoir—disability—life writing—personal essay—autism

One the biggest challenges in writing a literary memoir is the form itself, the way memoir inherently leans towards a particular type of chronological narrative. When I started to write a memoir about parenting my autistic son, I was very aware of the drive towards chronological telling and a happy ending. As James Bradley says, there is pressure for memoirs to come ‘pre-packaged with an inbuilt and largely predetermined narrative arc, an uplifting journey from squalor to redemption purpose-built to elicit the bursts of spontaneous applause that pepper American talk shows’ (Bradley 2008). The power of this narrative is seen in Oprah Winfrey’s response to James Frey’s ‘memoir’, A Million Little Pieces (2003), and her anger and dismay when it became apparent that Frey’s work included exaggerations and fabrications. The tragedy-to-triumph memoir, of course, must necessarily include such embellishments and inventions because it is a framing that fails to create space for the complexity of experience, what Bradley calls ‘the messiness and moral ambiguity of real life’.

This pressure towards the redemptive arc is amplified when, as in my memoir, the story is about disability. As Thomas Couser notes, disabled people and their families:

may be granted access to the literary marketplace on the condition that their stories conform to preferred paradigms. (Their ‘prose licenses’ carry restrictions.) Because disability is considered ‘downbeat’ or ‘depressing’, its representation may be allowed only on the condition that the narrative take the form of a story of ‘triumph’. (2000: 307-8)

Tragedy is allowed only if the book resolves into triumph through a happy or ‘redemptive’ ending.

Mitchell and Synder (2000) argue that disability pervades literature as a stock feature of characterisation, an opportunistic metaphorical device and a plot foundation whereby the disability represents a deviance or disruption that requires narrative repair. The disability, in effect, creates the need for narrative, which must then resolve the social/moral problem or breakdown. Lennard Davis notes that narratives involving disability ‘always yearn for the cure, the neutralising of disability’ (2002: 99). In what he terms ‘the normalcy narrative’, the disabled character must either be normalised or removed.

For parents writing about their disabled children, the fact of disability (either the child’s impairment or the result of this impairment on the child’s life) is usually the major motivation for the life narrative. That is, disability is the disruption that requires narrative, if not narrative repair, and the family’s response to the disability becomes the plot of the memoir. There is a risk, then, that the parent falls into writing a normalcy narrative, one in which the impairment becomes a problem and must be neutralised through cure, death or some other narrative device. Writing about my relationship with my son, I was concerned not to write a normalcy or tragedy-to-triumph narrative. I feared I would unwittingly write a story that places the diagnosis of a disability as the turning point (a kind of classical anagnorisis) and the post-diagnosis as an heroic rescue narrative (with doctor or parent as hero) and a triumphal ending. As well as being simplified and therefore dishonest, these tragedy-to-triumph narratives demonise disability and adopt a solely medical view of human variance, rather than a sociocultural view where difference is respected and valued. There are many parental memoirs about children with autism and a number of them follow this narrative scaffold, telling a story about a child’s ‘recovery’ from autism.1

My challenge, then, was to avoid the redemptive narrative arc and write a memoir that reflected what Bradley called ‘the messiness and moral ambiguity of real life’, that represented disability as difference rather than medical deficit, and that avoided a fabricated affirmative ending. I think of this type of memoir as a ‘counter-narrative’, a narrative ‘that resists an oppressive identity and attempts to replace it with one that commands respect’ (Nelson 2001: 6). Counter-narratives position themselves against dominant cultural narratives and act to increase the moral agency of oppressed groups. Harris, Carney and Fine describe master narratives as:

the social narratives created in the interests of dominant classes as well as the institutions they embody. They contain seemingly unambiguous information about specific social/cultural philosophies of justice and social prescriptions for behaviour as well as cultural values and directions for moral evaluations. (2001: 8)

Andrews notes that ‘one of the key functions of master narratives is that they offer people a way of identifying what is assumed to be a normative experience’ (2004: 1). In other words, master narratives are official or hegemonic narratives internalised and reproduced in everyday life. Counter-narratives, then, are those stories that offer resistance to dominant or official everyday narratives, and question dominant assumptions.2 According to Nelson, they act to resist exploitation, marginalisation, powerlessness, cultural imperialism and violence, but they also exploit the power of narrative to represent the complexity of relations between dominance and resistance. As Harris, Carney and Fine argue, ‘Counter stories have the complexity of lived experience at their heart—they resist simplistic understandings in favour of complicated, morally ambiguous and sometimes messy analyses of privilege and domination’ (2001: 9). Of course, counter-narratives are not simple acts of resistance, any more than master narratives are stable and unified. Just as master narratives are susceptible to fracture and subversion, counter-narratives may be both complicit and countering, something I discovered in my own work.

While I was always aware of trying to write a counter-narrative, the nature of the task and the way that the memoir form acts to facilitate complicity rather than challenge was something I had to discover from my research and my own creative practice. I knew I didn’t want to write a heroic recovery story but found myself slipping into writing scenes that demonstrated my son’s development. I wanted to show my son’s individuality but also make a link with other autistic people, to represent his actions and words accurately but not present him as a stereotype. I hoped to allow his differences but also reflect his similarities and ordinariness. I felt I should demonstrate aspects of my own ‘ableism’ and how my views changed, without divorcing myself and my son from broader cultural influences. And I wanted to interrogate society’s values and assumptions and allow for the possibility of change.

In attempting to achieve these goals, a key aspect for me was the form of my work. I decided to avoid telling a chronological story about my son and to write instead a series of themed autobiographical essays. I chose the personal essay because it is an ideal form for exploring uncertainties. The etymology of essay—attempting, testing or trying out something—fits very clearly with my approach both to parenting and to writing about that parenting. The 'irregular undigested piece' of writing that Samuel Johnson (Little, Fowler and Coulson 1973: 682) refers to is, I think, a good description of my own creative work.³

The personal essay form also lends itself to counter-narratives, including disability counter-narratives. Rosemarie Garland-Thomson, building on Caroline Bynum’s (1999) discussion about metamorphosis stories, suggests that the notion that ‘shape structures story’ could be ‘the informing principle of disability identity’ (Garland-Thomson 2007: 114). She notes that one of the most enduring cultural fantasies of contemporary life is a belief in bodily stability, or more precisely a belief that bodily transformation (e.g., ageing) is predictable and tractable. Garland-Thomson argues that ‘we use the cultural story that we call normalcy to structure our shapes’ (2007: 114). That is, we use an abstract ideal of normal human development—a story of predictable life passage—to understand our bodily selves. Disability, in contrast, insists that shape structures story, that our bodies structure the narrative.

A disability counter-narrative will contest master narratives in its content, but it may also do so in its form, by enacting this principle that shape structures story. By writing a series of essays, I have attempted to allow shape (that is, my own and my son’s bodily selves) to structure my story. The repetitions, overlaps and gaps between essays reflect the repetitions and gaps in life with an autistic child. The fracturing of chronological development that occurs for a reader replicates the atypical developmental path followed by my son. Each essay includes a theoretical thread alongside stories about my life as a child and as a mother to suggest the complexity of the narrating self who is researcher, narrator, subject and parent of subject all at once. As Bynum says, we are ‘shapes with stories, always changing but also always carrying traces of what we were before’ (1999: 11). If ‘The present is only possible for us if it is framed and set off against a retained past and a potentially envisaged future’ (Carr 1991: 60), then it is not surprising I felt the need to write about my past as well as my possible future.

Susannah Mintz (2007) notes that the essay form is well suited to represent disability due to its resistance to closure and resolution and the way it evokes both unpredictability and the stasis of disability. In her analysis of Nancy Mairs’ essays, Mintz shows how temporal looping across essays forestalls the reader’s ability to attain wholeness, and continually forces the reader to question their understanding of disability. Graham Good, too, points out that ‘Instead of imposing a discursive order on experience, the essay lets its discourse take the shape of experience’ (1998: 7). He argues that the essay is unsystematic, spontaneous, opposes doctrines and cultivates diversity. And Gabrielle Carey (2006) notes that the personal essay is reflective, open-ended, and oscillates between the public and the private, thus enabling it to address the complexities of subjectivity. As in memoir, the authority of the personal essay is not an authority of position or of learning, but of personal experience. The truth claimed is not a permanent, absolute truth but rather a temporary, personal and situated truth. The way the personal essay is resistant to closure, reflects unpredictability, is shaped by experience, fragments time, cultivates diversity, addresses subjectivity, and relies on the authority of personal and situated truth contribute to its value as a form for telling counter-narratives.

As well as considering the form of my work, I was alert to the potential impact of adopting literary devices, particularly the use of metaphor, in my memoir. Mitzi Waltz (2003) argues that there are a number of key metaphors that recur in narratives about autism. These include the ‘empty fortress’ notion, the changeling child, the feral or wild child, military metaphors, puzzle metaphors, and alien or stranger metaphors. The notion of ‘the empty fortress’ was used by Bruno Bettelheim as the title of his influential (and now discredited) 1967 book on autism. Susan Sontag points out the long tradition of metaphorical thinking about the body as fortress and illness as invader. She writes, ‘modern medical thinking could be said to begin when the gross military metaphor becomes specific’ (1989: 9) and illnesses are described as the alien ‘other’. The more mysterious the illness or condition, the greater the metaphorising. According to Sontag, the effect of such military imagery is significant: ‘It overmobilises, it overdescribes, and it powerfully contributes to the excommunicating and stigmatising of the ill’ (1989: 94).

As Waltz points out, Bettleheim’s fortress image contains within it many of the metaphors of autism since employed, including the idea of the emptiness, otherness and non-humanness of autistic people, the notion of the hidden ‘real’ self, and the notion of puzzle or enigma. She suggests that Bettelheim’s empty fortress refers to the Germanic myth of Parsifal, holy fool turned knight, who searches for the Holy Grail:

If breaching the walls of the empty fortress to liberate the Holy Grail was Parsifal’s quest, Bettelheim’s use of the metaphor positions the therapist’s quest as breaching the defenses of the autistic child to reveal his human self. By doing so, he declared that the ‘problem’ of autism lay within the child, who Bettelheim believed had built these barriers as a defense against abusive parenting. (Waltz 2003: 3)

Waltz goes on to point out that alongside the metaphor of the imprisoned, hidden or invisible child, the rescuer motif supports a pervasive myth: that a ‘normal’ child is locked inside the autistic child, awaiting the heroic rescuer.

The notion of a military campaign to ‘unlock’ the autistic child was used in one of the earliest parental memoirs about autism, The Siege by Clara Claiborne Park (first published 1967), and it continues to be used by groups such as Autism Speaks, a parent fundraising and medical research group. As more medical research has been undertaken, the puzzle metaphor has become more prominent, often being used by autism groups as the basis for their logo. Metaphors of changeling children, wildness or ferality are also common in narratives about autism, and as Waltz points out, they clearly render their subjects ‘as less than human’ (2003: 4) and ripe for medical or magical intervention.

These common metaphors all link the use of disability as a symbolic marker in literature to the more current medical paradigm. In these metaphors, autism acts both as a dysfunction (the medical paradigm) and as a moral or spiritual trope for either child or mother (the symbolic paradigm). The idea that the autistic child is locked inside him or herself, ready to be rescued by a heroic doctor or therapist allows the two paradigms to merge in the act of rescue or normalisation through medical intervention. This conjunction of symbolic and medical paradigms is strengthened, I believe, because of what Waltz describes as ‘the echoes of the Parsifal legend’ and the notions of innocence and purity associated with Parsifal. The figure of the innocent but unwell child is a hugely powerful symbol, one which goes against all our expectations and beliefs and which requires a narrative—if not real life—response.

As Waltz notes, many autistic people (for example, Amanda Baggs, Michelle Dawson and Jim Sinclair) have interrogated these metaphors and argued against them. This, however, does not appear to have lessened the hold that these metaphors have in public life. Nor has it reduced the role of autism as an important bulwark for normalcy. If, as Davis suggests, the examination of disability is ‘a desperate attempt by people to consolidate their normality’ (2002: 117), then the creation of autism metaphors is surely a desperate attempt to patrol the borders of normality.

This role of autism as an extreme border for normality makes it perfect material for the writer wanting to explore human nature. As Polly Morrice (2005) writes:

It’s easy to see autism’s appeal to storytellers. Even mildly autistic people have problems communicating and understanding social behaviour; what’s more, these difficulties remain tantalisingly unexplained in an era when medical advances have demystified so many other ailments. We now know too much about, say, cholesterol, for a writer to portray heart disease as metaphorically as Ford Madox Ford did almost a century ago in The Good Soldier. But writers can still turn to autism when they’re looking for an ailment that can drive a plot and convey what English teachers once called ‘layers of meaning’.

While many novelists have used autism in this way, it provides a real challenge to the life writer whose story is about autism but who wants to contest the symbolic and medical paradigms and write a counter-narrative instead. Knowing how often an autistic person is presented as fool, feral child, alien, genius or enigma, I looked for alternative metaphors. In the end, I found no alternative metaphor and came to the conclusion that this was appropriate, even if not aesthetically pleasing. It was interesting then to read Kristina Chew’s (2007) analysis of autistic language and her conclusion that autistic people think metonymically rather than metaphorically. Chew notes that while metaphor links disparate objects on the basis of some similarity or shared characteristic, metonymy links disparate objects on the basis of contiguity or association. She argues that autistic people use metonymic correlations between items that are associated by chance to make sense of their world, understanding these associations much better than associations based on the ability to generalise and therefore create metaphor. She writes, ‘Autistic language is a fractured idiom, its vocabulary created from contextual and seemingly arbitrary associations of word and thing’ (2007: 142). Perhaps my own essays reflect some of this ‘fractured idiom’. Have I been influenced by my son to think in a different way?

Of course, in spite of my best efforts, there are traces of the normalcy narrative and redemptive arc in my memoir. The ending is not especially upbeat, but it is certainly not depressing. In writing about a much-loved child, it is also hard to avoid sentimentality, which allows the reader access to the narrator but lessens the characterisation. As Michael Ignatieff says (in the context of television and vulnerable subjects), ‘sentimental art sacrifices nuance, ambivalence, and complexity in favour of strong emotion’ (1998: 293). As a parent, I wanted to express strong emotion but also to embrace nuance, ambivalence and complexity. It was important to me to try to include what Bradley describes as life’s ‘messiness’, which we might also call creativity, and ‘moral ambiguity’, which we might also call openness or unorthodoxy.

My research and creative practice have not meant that I have resolved the ethical, representational or narrative challenges in my own memoir. Rather, I became more aware of these dilemmas and of my inability to resolve them satisfactorily. I recognise that my own limitations and perspective have both added value to and compromised my work. This, I think, is one of the most interesting aspects of relational memoirs, and adds to the complexity of the creative dilemmas around such life writing.

• 1. The term ‘recovery’ is used to refer to a belief that a child is no longer autistic. I use the scare quotes to signify the dilemmas raised by a belief that autism is like an illness from which one can recover, rather than a neurological difference or a diagnosis given to people based on certain criteria.
• 2. I am using the terms counter-narrative and counter-story interchangeably here although others may distinguish between them.
• 3. There is a significant body of literature on the essay form, some of which addresses the way essays are used by those who are marginalised or were previously silenced. I do not have space to explore it in this essay and instead provide a summary of some of the key factors leading to my choice of the personal essay form.