Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Wednesday, December 24, 2014

Disability in Science Fiction notes: part 2

Still reading Disability in Science Fiction: Representations of Technology as Cure. It's edited by Kathryn Allan. EasyBib tells me the citation for the book as a whole is this:
Allan, Kathryn. Disability in Science Fiction: Representations of Technology as Cure. New York: Palgrave Macmillan, 2013. Print.

Part 1, covering the introduction and chapters 1-2, is here.

Below are my (mostly angry live-blog style) notes on Chapter 3.

 Chapter 3: The Many Voices of Charlie Gordon: On the Representation of Intellectual Disability in Daniel Keye's Flowers for Algernon. Howard Sklar. 47-59.

I've read Flowers for Algernon. I had nightmares after. Insert nervousness about the chapter here.

“Ordinarily, the compressed time span of Charlie's involvement with the experiment would provide limited scope for an overview of his life; however, the dramatic changes caused by the experiment produce a radically condensed version of his life, from the metaphorical “child” that opens the narration to the self-aware “adult” that he gradually becomes.” (47.)

Ok, so this quote creeps me the heck out. Seriously. We're calling Charlie, the main character, a metaphorical child. The guy is not a child! He's a disabled adult. This is not the same thing as childhood, even if the cognitive tools he's using are the same ones a neurotypical kid would be using, which they probably aren't, the extra years of experience living and using those tools matters!

And! I'm pretty sure “that” being the pronoun-like word after child, opening the story, the version of Charlie we start with who absolutely is cognitively disabled, versus the “adult” that he later becomes? Yes, it's a linguistic nitpick and the author would probably say it's just sentence structure agreement stuff, but how come Charlie only gets an actual pronoun after he's been neurologically enhanced?

Also, what's with the idea that this makes it difficult to locate Charlie's true voice? If we're working with the assumption that a change this big is still the same person (which, meh, I'm kind of iffy on, but since I don't recall Charlie questioning it and this author seems to be working with it,) then all the voices Charlie wrote in are his. None of this wanting to find his true voice nonsense, his voice can change over the course of the story, and if he's changing we should expect his voice to change too!

“In literature and life, the actual voices of people with intellectual disabilities are typically heard-- if at all-- through other people's accounts. When their actual life stories are recorded or written, they are generally reported by others, with all the editing and redaction that entails. In fiction, the distance is even greater, with nondisabled novelists and story writers providing the words and tone for their intellectually disabled characters.” (50)

Yeah that's a big problem.
I think I'm OK with the author describing Charlie as having multiple voices over the course of the story rather than just one, but extremely not OK with the idea that one of the voices is his true voice, because then the others would be fake voices or not really his- with indication of that being his opinion, of him thinking only one of the versions is really him, kind of like with autistic people who think that if we were somehow made not autistic then we would be different people, then the idea of only the pre-experiment version being him, having his voice, is one I could buy, but are they really going to go with that idea?

OH FOR PETE'S SAKE. The author actually says it straight out “Charlie argues vehemently for the continuity between his earlier “self” and his present “self” when he describes this dilemma later to Professor Nemur” (54.) Why then are we trying to divide up selves and voices and find one that's the true one, they're all him. (Go check pg 63 or so, “But I'm not an inanimate object...” in Flowers for Algernon)

“Mostly then, what Charlie wants is for people to recognize his humanity-- both before and after the procedure. In these examples-- the progression from his earlier, developing awareness of the way he has been treated, to an attempt to weigh the significance of that treatment and how to deal with it, to arguing for his dignity as a person regardless of his intellectual capacity-- all these suggest that he is changed yet unchanged, that there is a unified core in his voice, however intelligent or lacking in intelligence the features in each of those voices may make him seem.” (54.)

I want to question a thing, now, based on the bit where as much as I have been arguing for listening to what Charlie says in evaluating who Charlie is, he is a character written by a nondisabled author and he therefore isn't the greatest example of an actual person with intellectual disabilities who fits a given assumption.
“There is indeed an assumption that intellectually disabled individuals are limited in their abilities to tell their own stories. Naturally, cognitive impairment may limit the ability to understand aspects of an individuals own experience, as it does for Charlie.” (55.)

I'm not actually going to deny that this can happen- it's happened to me before, where my own cognitive disabilities have meant it took me until years later to understand certain aspects of my experiences, and also where people's assumptions about my cognitive abilities have formed a barrier between myself and that understanding. But Charlie is not the example to use here. I know we're talking about Flowers for Algernon, but using a fictional disabled character, especially one written by an able person, as an example of a thing that can actually happen with disability to show that it can happen? Bad idea. No. Go with actual disabled people for that, not an abled authors impression of a disabled person.

“Charlie, speaking with the voice of academic intelligence and scientific authority, ultimately comes to know what his less capable voices have been saying all along: that the experiences are his alone to voice.” (55.)

AND WHY DO WE NEED ACADEMIC VOICE CHARLIE TO SAY IT? I mean, yes, great that this is how we end that chain of thought, ish, as opposed to wanting scientists saying stuff, but why do we need the now-academic Charlie to realize it before it's believed rather than listening to Charlie while he's still disabled??? That is seriously not OK.

Good that now we've got recognition of the bit where Keyes is a nondisabled author, and that this is “problematic” for the whole novel, even more so with how it ends.

That ending. It's not until Charlie is realizing that he's going to be intellectually disabled again and is scared of it (despite thinking that he was better off before in some ways) that he fragments at all. Hrm. Fear of who he used to be? That wasn't there before, it's not consistent with the Charlie we'd seen before, why'd it show up now?

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