I have begun to add the narrative pieces in. I haven’t done much of the scholarly parts because that’s going to take a bit longer. But I will be doing it at some point, so have no worries about that! I have changed the school names to pseudonyms.
My crazy goal is to have a draft of this thesis done before I go back to school. However, it is a crazy goal, so I don’t think I will actually achieve it, but I might. But I probably won’t and that is okay. If I can go back with what I already have, then I am already good!
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. As such, every other section will be a non-fictional narrative that fits with what surrounds it.
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?
I was hired as an emotional/behavioral disorders (EBD) special education teacher five days before new-teacher workshops began. When I asked my supervisor where I would be teaching, he told me they don’t know yet. Patiently, I went through the workshops waiting to find out where I was going to teach.
Finally, on the Friday before school started, I found out where I was going to be: Walsh Elementary School. My blood ran cold, I’d heard things about that school: it was the worst school in the district behavior-wise. I had my work cut out for me, but I decided that I was going to be a good thing to happen to this school. I probably couldn’t turn the whole school around, but I could be there for my students even when everyone else abandoned them.
But above everything else, I was not going to put them into a physical hold. I was going to respect their boundaries no matter what.
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.
1.1.1 Leo Kanner Definition.
1.1.2 Hans Asperger Definition.
1.1.3 DSM IV Definition.
1.1.4 DSM V Definition.
1.1.5 My Definition.
On the first day of school, I found out that I was assigned a shadow. The district didn’t feel that I didn’t have enough experience to work at Walsh Elementary School, so they made the lead EBD teacher for the district watch over everything that I did.
She read every word I wrote, watched every interaction I had with students, and criticized just about all of it. “If you do that, then they are going to walk all over you.” The discipline had begun, but it wasn’t me disciplining my students, but the school district disciplining me.
Two weeks in, I had a particularly rough day. One of my students bit me because I wouldn’t let him climb over the attack barricade. The attack barricade was a gym mat that was put up against the doorframe of a side room where we would herd the violent students into and put the mat up and they would run up against it swearing, spitting, trying to kick and hit us.
So the principal decided that he was going to be suspended because he had bitten me. He finally sat down, breathing hard from all the energy exerted. Sensing his mood had somewhat shifted, I told my shadow that I was going to go inside to sit next to and try and talk to him. As soon as I had sat down, he bolted and I found out that my shadow decided that this was the time for a break in the next room.
The mat fell with a violent whoosh and he ran out the door. I ran after him, only to hear, “What the hell?” coming from my shadow. I didn’t have time to process it because I had to hurry up and get him before he potentially hurt someone. I found him again in the classroom and tried to get him out. The general education teacher just gave me a dirty look as if to say, “How dare you let this child back in here!”
I radioed my shadow because I didn’t know what to do. He was calmly in his classroom, not hurting anyone, but he had been suspended. I knew that removing him would cause a scene and he may get violent again. I heard back from my shadow, letting out a deep sigh of disappointment, “Just leave him there, then.”
I walked back to my classroom and entered just soon enough to hear my shadow talking to my co-worker, saying, “This job wasn’t meant for everyone, I just don’t think he can handle this job. I just hope he figures that out on his own.” I was crushed, to say the least.
At the end of the day, we sat down and talked. She used an idiom that made no sense to me, so I asked, “What are you talking about?”
She sighed again, “Well, it means…” She paused, looking at me as if for the first time, “Wait, are you autistic?”
Taken aback a bit, I replied, “Probably, but not officially, why?”
“A lot of stuff make sense now.”
It was at that moment that I found out that another of my students was not on the bus, so I had to go figure that out. I searched all of the places at the school where he might be, but couldn’t find him. At the moment that I really started stressing, I got a radio message from the school counselor, “Where’s the student who bit you? He needs to get on the bus.” They were talking about the student who had been suspended. I informed them that that student had been suspended, so he wouldn’t be riding the bus. “It doesn’t matter if he was suspended or not, he needs to get on the bus.”
I contacted the paraprofessional who was with him and let him know that he needed to put the student on the bus. I finally located the other student who wasn’t on the bus and found out that he was riding the bus that he had taken up until a few days earlier. I walked back to my classroom, feeling good about solving that.
I got in and my shadow was pacing, “What the hell!” She demanded.
Taken completely aback, I responded, “What’s going on?”
“That student was not supposed to get on the bus. We called his mother, who came by to pick him up while you were off doing whatever you were doing.”
“The school counselor told me to get him on the bus.”
“The school counselor didn’t know that he was suspended.”
“I told her that he was and she still told me to put him on the bus.”
“It doesn’t matter, he should not have gotten on that bus. You’re a teacher, you should know that!” With that, she stormed out.
My shadow told me that I had to be with my students and advocate for them when they went to the principal. She told me that I had to be at every meeting that the principal or vice-principal had with one of my students.
One of my students was called to the office and I went with him because I heard the message over the radio and that was part of my job. We got into the school office and they said that the principal would be with us in just a few moments. Well, those few moments took about an hour. An hour where I just sat there with my student and tried to keep him from completely freaking out.
My shadow storms in after 45 minutes and demanded where I have been. I told her that we were waiting to meet with the principal. She told me, “You cannot just waste time, Sam. You have to realize that this isn’t your only student.”
“While you are right, this student needs me right now, we have been waiting for 45 minutes to get in to talk to the principal for…I don’t even know what. I am here to be an advocate for him, and that is what I have been doing, so I am not wasting time!”
We finally got into the principal’s office and she was angry because a student had come forth saying he had picked on another student. She refused to let him speak, so once I found an opening, I turned to the student and asked him what his version of events was.
He was visibly angry and it came out in his voice, which was shakingly low. “She came up to me and called me a name, so I called her a name. That’s what happened here. I didn’t bully her.”
“The way I see it, you did bully her,” The principal replied. “We have no other reports of her calling you anything, so you are going to in-recess detention.” He stood up and began pacing, fuming.
I asked him, “Did anyone hear her call you anything?”
“Yeah, there were three people.”
“Okay, just write down the names of those three people and we’ll see if they heard her call you anything.” He stopped pacing and sat down again, writing the names.
“That won’t be necessary.” The principal said.
Confused, I asked, “Why?”
“Because he is a bully and he bullied her.”
“Perhaps he did, but it is possible that his story is true as well, and we can find out.”
“No. Thank you for coming in today. Mr. Harvey, may I have a word?” My student left and she gave me a cold, hard look, “Look, Mr. Harvey, you need to learn your place if you are going to stay employed.” I stood up to leave, and she said, “One more thing. The district is shifting teachers around and we were wondering if you would want to teach at Adonis High School.”
“Yes. When would that start?”
“Two weeks from now.”
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.