Paratext and Writing about an Autistic Child

A few days ago in a post entitled Fair Representation? I asked:

Am I being honest in more portrayal of Charlie; am I being fair and thoughtful in my writing about autism and autistic persons? If you are the parent or sibling or relative, of the teacher or other professional, of an autistic child or adult, do you ever think about how you are representing him or her?

In response to this question of “how do we represent our autistic children,” Lisa/Jedi wrote: “B is capable of reading & understanding what I write, so sometimes it feels like a tightrope between being honest about my parental journey with him & worrying about possibly embarassing him. “…. we keep working on teaching him to be his own advocate,” wrote Daisy. Charlie’s language is still very minimal and what I note that he says on Autismland is often the clearest, longest thing he has said in a day or days (“Hi, Veronn ikka!,” on Sunday). I tend to write quite a bit (understatement…..) around and about Charlie’s utterances. I write what can be called paratext.

Paratext—para is from the ancient Greek for “beside”—enables “a text to become a book and to be offered to its readers, and more generally, to the public” (Gérard Genette, Paratexts: Thresholds of Interpretation (1987), 1). Examples of paratext are prefaces, dedications, epigraphs, introductions; Professor Beth A. McCoy cites the abolitionist William Lloyd Garrison’s preface to Frederick Douglass’ Narrative of the Life of Frederick Douglass, an American Slave as an example of a paratext: Garrison “[thunders] that Douglass will present only ‘SLAVERY AS IT IS,’ with ‘nothing drawn from the imagination’ (32)”, as McCoy notes in a 2006 article (Race and the (Para)Textual Condition). Paratext, then, is the explanatory, descriptive, and narrative material that gets written “beside” and “around” Douglass’ narrative—-and, by analogy, Charlie’s shorter utterances.

McCoy is writing about “the intersections of race, power, and culture”—and at some point I would like to write about the intersections of disability, language, power, and culture in writing by non-autistic writers about autistic children. In the meantime, I will be thinking about myself as writing “paratext” to Charlie’s more fragmentary, always meaningful, speech.