This is the proposal structure and theoretical ideas that would remain until a few weeks ago. My advisor had encouraged me to look at Autism Speaks from a rhetorical lens of how they represent and narrate the story of autism (and what autism is, and the autistic person, and other things like that) and how that influences the mainstream culture’s view of autism and, ultimately, how all of this influences the agency of autistic people.
I felt this framework worked really well for this analysis. My narrative piece (or the “8 years of ‘close, but no cigar'”) would stay this way for some time, but would eventually change to only include a tiny section of what I had written.
My advisor ended our meeting like he always ended our meetings, by saying, “Keep it simple.”
The subject of my thesis is how autism advocacy organizations influence representation, narrative, agency, and identity to advocate for autistic people.
Looking at two autistic advocacy organizations, the language they use seems to influence how the mainstream culture views autism. Language that portrays autism as positive, or even neutral, (i.e. has autism, etc.) may construct for the audience a terministic screen that leads to society internalizing this ideology, directing them to view autism as a positive or neutral thing. Conversely, language that portrays autism as negative (i.e. suffering, afflicted, affected by, etc.) goes through the same process, but directs the audience to view autism as a negative thing. Further analysis of Autism Speaks reveals that not only do they use negative language surrounding autism, they move beyond by seeking to cure autism; in other words, they seek to eradicate autism and, consequently, autistic people. They do this by using science that is based on ableist ideology to create a bastardized, Frankensteinian version of autism. This leads to the main argument of this culminating project: ableistic science leads to ableistic advocacy.
Drawing from disability studies and the rhetorical perspectives on semiotics, terministic screens, and the rhetoric of science, my culminating project is built to answer two primary questions. First, how does Autism Speaks have the authority to pursue the eradication of autism? Second, who does Autism Speaks really advocate for?
Accordingly, in this proposal, I explain the initial motivation behind my research; present a methodology that unites Michel Foucault’s concepts of archaeology and genealogy with Latour’s Black Boxes and Burke’s Terministic Screens; analyze findings from a preliminary study of the Autism Speaks website; provide a rationale and overview of the full study; and describe the larger societal implications and significance of this project.
8 Years of “Close, but no Cigar”
8 years ago, I was a young, 18-year-old college student learning my way toward a degree in special education. In my freshman year of college, I had to take a class on the foundations of special education. In it, we learned about learning disabled students, emotional/behavioral disordered students, developmentally delayed students, and autistic students to name just a few.
I learned about each of these in that order and wrote down notes so I could know what strategies work best. But then, we got to the autistic students section and I began to see something that I had never realized before. As we learned the criteria for autism, I began to recognize many of the criteria for autism on the Diagnostic and Statistical Manual IV (DSM-IV) in myself.
I remember driving home with my mom during Winter Break of freshman year sitting in the passenger’s seat trying to figure out how to tell her. Eventually, I just blurted out, “Mom, I think I have autism.” She chuckled for a bit until she realized I was being completely serious.
“But Sam, autistic people don’t talk. You do.”
Armed with the knowledge of what I had learned the previous semester, I said, “But autism is a spectrum. It’s not just autistic people who don’t talk, there are some who do. It’s called Asperger’s Syndrome.”
We drove the rest of the way in silence as we both thought about autism. I decided to ignore the similarities because I didn’t see a point to getting diagnosed. Not only that, but there was no way that I was autistic.
Three years later, in the summer between my Junior and Senior year, I worked at Camp Friendship, a camp that works with disabled people between the ages of 5 and 90. I became known as the “Autism Whisperer” because I worked so well with the autistic campers. My most vivid memory was when I walked in on several counselors force-feeding a non-speaking 90-year-old autistic camper who understably spit it all back into their faces. I stopped them and told them that I was going to take over. I was exhausted at that point because the noise in the cafeteria seemed defining to me and the fluorescent lights above me didn’t do anything to help. I asked if we could go outside to eat and he stood up without hesitation. We found a nice, shady spot under a tree and I put some food on the spoon and told him, “Whenever you are ready, guide the spoon to your mouth.” I sat there for about 30 seconds and he slowly reached out and guided the spoon to his mouth. “I think I know what your going through. It’s the consistency, right?” He nodded and I continued, “Growing up, I would do the same thing when I had to eat vegetables. I still do the same thing!” The light-bulb lit up again and I wondered if I had autism.
Curious, I looked up autism that night. The first search result was “Autism Speaks,” which I had heard of during the past three years. I read through several of their articles and began to decide that I was not autistic. I retreated from the idea that I was autistic because they portrayed an autism that terrified me. An autism that needed to be fixed because most autistic people were nonverbal and low-functioning. But I wasn’t either of those things.
So, I put the idea of me being autistic into the back of my head again for another two years. In my first six weeks of teaching special education, my supervisor was talking to me and suddenly stopped and asked, out of the blue, “Are you autistic?”
Taken somewhat aback, I responded, “Possibly, why do you ask?”
“You have a lot of traits that are very similar to my husband, who’s also autistic.” And thus, the idea of me being autistic came into my mind once again. And once again, I searched what autism was and found “Autism Speaks.”
This time, I was even more terrified of what I found. They portrayed autism not just as a bad thing, but as a sort of monster that waited until you least expected it to creep up and kidnap your child leaving a screaming empty husk of nothingness behind. And for the third time, I put it into the back of my mind, but not so far back as to never think about it. Every few weeks, I would think about it and put it aside in my mind.
Last year, I began to work on my presentation for the Great Plains Alliance in Computers and Writing and I wanted to do a presentation on autism and identity. How is identity formed in autistic people? Yet again, I began to wonder whether or not I had autism. Once more, I looked at the Autism Speaks website. But now, I had a strong arsenal behind me: rhetoric. I looked at Autism Speaks, the same site I had looked at twice before and walked away deciding I didn’t have autism because of what it did, and it was fear-mongering. Every awareness campaign was rife with making autism into a 21st century monster.
Several months later, I read an article entitled “Autism and Rhetoric” by Paul Heilker and Melanie Yergeau and I saw autism in a new light. In their article, they say, “every public discourse on autism is begging for rhetorical analysis.” There is no more renowned a public discourse entity than Autism Speaks.
Macro – Foucault’s concepts of genealogy & archaeology
micro- Critical discourse & Critical ethnography of Autism Speaks
Rationale & Overview (How to expand on what I’ve done so far)
Societal Implications and Significance of this Project
At this time, I am projecting the completed thesis will consist of seven chapters. Below, I outline those chapters and provide a brief summary of what I expect to accomplish in each of those chapters.
- I will outline my argument and give general overview of my thesis. I will establish exigency by summarizing my findings that Autism Speaks’ goal is the eradication of autism.
- Lit Review – How I got here?
- I will situate my study in how I got to my current topic. I will continue to establish agency by documenting the power of television to create identities and images
- Outline of Study and Goals (Methodology)
- I will explain the reasons behind the choices I made in
- The results of the study
- I will detail the data that I have gathered.
- I will tie everything together, cementing the link between ableistic science and ableistic advocacy, and the link between the internet and autistic self-advocacy/activism.
On the following page, I offer what I believe to be a thorough and realistic timeline that will enable me to gather and analyze data one other autism advocacy organization, draft the seven anticipated thesis chapters, and revise the entire document by the deadline set by the School of Graduate Studies to qualify for graduation in Spring 2016.