In this draft, I decided that what I had written for my proposal shouldn’t be in my introduction. I decided this because my research question as it stands didn’t fit the writing style I was using.
I am using an autistethnography, which means it is a story about me that relates to what I am writing about. My research questions didn’t have anything to do with me. So, I started working with the questions “What is autism and how is it rhetorically constructed,” “What is my definition of autism,” “What is the dominant discourse on autism in Autism Speaks, Autistic Self Advocacy Network, Autistic Women’s Network, and Grassroots,” and “What is advocacy?”
I haven’t written these down yet in this draft because I’m still trying to figure out how to connect these questions to advocacy and what I had before. From what I hear, thesis committees don’t take kindly when you show up with a thesis that isn’t about the same thing as
I also figured out the structure of my thesis. I have been doing a lot of research for this thesis. Not much of it has actually been on the topic that my proposal was on. Most of it has been on 1) identity formation in autistic people, and 2) theory of mind. Both of those have significantly impacted where my thesis is today. So, Chapter 1 (not the intro) is going to be identity formation and chapter 2 is going to be the theory of mind stuff.
Let me explain how I plan on making it an autistethnography. My main influence is using Melanie Yergeau’s “Clinically Significant Disturbance: On Theorists who Theorize Theory of Mind” because I love how she develops her scholarly pieces through the story that she tells. Every now and then, she takes a break from the scholarly stuff and tells a bit more of the story which then leads into the next scholarly bit.
So, my thesis is going to use this style. Mixing scholarly with a story that leads or connects with the scholarly. I have the introduction’s story down, and a bit of an idea for chapter 1 and 2, chapter 3 is going to be an expanded story of the one I told in my proposal. All of this is telling one story: Who am I?
As of yet, however, I have not yet written these narrative pieces. I’m still moving stuff around to fit with what I think it needs.
The subject of my thesis aims to illustrate both how advocacy is rhetorically constructed in various contexts by various people and the consequences of advocacy. I will do this by exploring what advocacy is, how it is rhetorically constructed, and how it affects autistic people.
At its core, my thesis and this proposal will be an autistethnography (a play on the term autoethnography). An autoethnography is both a research method and writing style that is reflective of the researcher’s personal experiences as they conduct the research. An autistethnography is the same thing, but conducted by an autistic person.
Using Burke’s concepts of terministic screens and pentad, Foucault’s concepts of genealogy and archaeology, and Bruno Latour’s concept of the black box, my culminating project is built to answer four primary questions. First, broadly speaking, how is advocacy rhetorically constructed? Second, what is pseudo-advocacy, what does it look like, and what are its consequences? Third, how does Autism Speaks establish itself as an authority qualified to advocate for autistic people? Finally, what rhetorical moves do people identified as “in need of help” use to advocate for themselves?
1. Definition of Terms
In this section, I will be highlighting and defining the terms that I will be using throughout this thesis that may have a different definition than the dominant definition.
1.1 Identity-First Language
- Use identity-first language unless quoting or talking about an author who has explicitly asked to be discussed with person-first language.
1.2 Trigger Warnings and Content Notices
1.3.1 Leo Kanner Definition
1.3.2 Hans Asperger Definition
1.3.3 DSM IV Definition
1.3.4 DSM V Definition
1.3.5 My Definition
2. Theoretical Methodology
In this section, I will discuss the theoretical frameworks and how I plan to use them in this thesis. I will use the pentad and terministic screens to analyze how advocacy organizations represent and narrate autism. I will use archaeology, genealogy, black box, and terministic screens to trace back the advocacy organizations to their core idea.
2.1 Burke’s Pentad
According to Blakesley, Kenneth Burke claims that in nearly every discourse, there is a discussion on the motivation of human action. This discussion on motivation usually falls into five categories (32-33), what Burke calls the pentad: act, scene, agent (actor), agency (the tool that the agent/actor uses to perform the act), and purpose (of the act).
Using this framework to analyze artifacts from several autism/autistic advocacy organizations reveals how these organizations tell the story of autism. Furthermore, it also reveals the motivation behind particular both the characters in the story of autism and the author/organization communicating the story.
2.2 Burke’s Terministic Screens
Terministic screens is a theory stating that the author’s word choice influences how the reader/audience thinks about the topic being written about. It is a set of terms, phrases, or analogies that ensure the audience sees a topic from the author’s perspective. This prevents the audience from seeing any other viewpoint. “Even if any given terminology is a reflection of reality, by its very nature as a terminology it must be a selection of reality; and to this extent it must function also as a deflection of reality” (emphasis in original, Burke 1341).
In this thesis, I will use a cluster analysis. A cluster analysis is done by aiming to reveal the “verbal tics” of the writer’s style. In relation to autism, this may include using terminology that is associated with the medical model of disability. Blakesley gives the example of Burke’s cluster analysis on Adolf Hitler’s Mein Kampf when he shows, “Hitler habitually characterized Jews as devils and the masses as feminine, combining religious and sexual imagery to horrific effect” (104).zz
2.3 Foucault’s Archaeology and Genealogy
In their article “Towards a Foucauldian Methodology in the Study of Autism: Issues of Archaeology, Genealogy, and Subjectification,” Eva Vakirtzi and Phil Bayliss discuss Foucault’s concepts of genealogy and archaeology.
They define the archaeologist as one who “is interested in how one discursive formation comes to be constituted for another…Thus, the ‘archaeologist’ has to take into account who has the right to make statements” (371). In other words, archaeology is looking back and attempting to determine what ideologies got us to this current idea: or this image of autism as something that needs to be fixed. I will be specifically looking at the ideological precursors of Autism Speaks in order to determine how they have the authority to do what they do.
“However, archaeological analysis cannot say many things about the causes of the transition from one way of thinking to another” (371). This is where Foucault’s genealogy comes into play. “The ‘genealogist’ concentrates on the relations of power, knowledge, and the body of modern society. According to Foucault, the task of the genealogy is to destroy the primacy of origins, of unchanging truths.” So, genealogy is the analysis of how we got this ideological point.
2.4 Latour’s Black Box
In his book “Science in Action,” Latour explains that the Black Box is a term that comes from computer science and engineering and it is used “whenever a piece of machinery or a set of commands is too complex. In its place they draw a little box about which they need to know nothing but its input and output” (2-3). To summarize, it’s a complex thing that we don’t care about, so we only focus on the input and the output.
The Black Box is another way of saying Foucault’s archaeology because it only focuses on the input and the output. However, this thesis will attempt to break open these boxes to reveal how autism and autistic advocacy organizations like Autism Speaks has the authority to advocate for the eradication of autistic people. But how do we do this? The Black Box is a Black Box, so we can’t analyze it, right?
However, Latour discusses how Black Boxes can be used “to lead the reader somewhere else downstream” (23). This is identical to the purpose of terministic screens. Black boxes, then, can be opened by analyzing what terministic screen was applied to the input to make its output.
Latour says, “No more has to be said about it [the Black Box] that it can be used to lead the reader somewhere else downstream, for instance to a hospital ward, helping dwarves to grow” (23).
So, a Black Box is very similar to the first rule of fight club: we don’t talk about what’s in the Black Box. This lack of discussion and explanation leads the reader somewhere. In a sense, it is a reflection of reality, therefore, it is a deflection of reality―the same definition as terministic screens. This means that black boxes can be analyzed using the same methods rhetoricians use to analyze terministic screens.
This thesis is written as an autistethnography. The style of autistethnography that I will be using is similar to one that Melanie Yergeau uses in her article “Clinically Significant Disturbance: On Theorists who Theorize Theory of Mind.” In the article, she tells a personal story that she expands on bit by bit and connects it to her scholarship; they complement and build off of each other.
There are several reasons I am using an autistethnography as the narrative structure of this thesis. Chief among them is that I come from several minority groups, chief among them being a group where I can “identify as autistic, but cannot define what it means to be autistic” (Rex Veeder, personal communication, December 3, 2015).
This is because clinicians, psychologists, and doctors define what it means to be autistic, not autistic people ourselves. This is clearly neurotypical bias. Is it appropriate for white people to define what African American means, or Christians what Judaism means. They are not part of the group, yet they are defining the identity of the both the group and the people within the group.
Upon beginning my search for a theoretical framework that fit exactly what I have described, I found Muted Group Theory.
3.1 Muted Group Theory
(Explain what Muted Group Theory is)
3.2 Autistethnographies and Muted Group Theory
4. What to Expect
Blakesley, David. The Elements of Dramatism. 1st ed. New York: Pearson/Longman, 2001. Print.
Burke, Kenneth. “Terministic Screens.” Modern and Postmodern Rhetoric. eds. Patricia Bizzell and Bruce Herzberg. 2nd ed. Boston: Bedford/St. Martin’s, 2001. Print.
Latour, Bruno. Science in Action. Cambridge: Harvard University Press, 1987. Print.
Vakiritzi, Eva and Phil Bayliss. “Towards a Foucualdian Methodology in the Study of Autism: Issues of Archaeology, Genealogy, and Subjectification.” Journal of Philosophy of Education. 47.3 (2013): 364-378. Print.
Yergeau, Melanie. “Clinically Significant Disturbance: On Theorists who Theorize Theory of Mind.” Disability Studies Quarterly. 33.4 (2013): n. pag. Web. 18 Dec. 2015.