So, I am going to post whatever I write on this blog. I am sure it will probably end up being severely edited and possibly taken out, but I think it will help hold me accountable. I will bold the parts that are new and maybe reflect a bit on why I did what I did.
This, however, is the first draft that I wrote last month. It is exactly the same as my thesis proposal, with some minor changes.
Samuel Harvey – Thesis Proposal
The subject of my thesis aims to illustrate how advocacy is rhetorically constructed in various contexts by various people.
Autism Speaks describes itself as the “world’s leading autism science and advocacy organisation” (“About Us”). In my thesis, I will explore what advocacy is and how it is rhetorically constructed. In this thesis proposal, I will specifically analyze how Autism Speaks rhetorically constructs advocacy and how this advocacy affects autistic people’s lives. In the end, one thing will be clear: Autism Speaks seeks to cure autism because autism negatively affects parents’ lives.
At its core, my thesis and this proposal will be an autiethnography (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 autiethnography 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?
In this proposal, I explain the initial motivation behind my research, analyze findings from a preliminary study of an op-ed piece on Autism Speaks’ website, provide a rationale and overview of the full study, and describe the larger societal implications and significance of this project.
Narrative – PART I
As I was researching for a presentation called “autism and identity formation through the internet” last year, I began to think, for the fifth time in eight years, that I may be autistic. When I thought I had it previously, I searched the term “autism” through Google and the first search result was always Autism Speaks.
Each time I read about what autism was on their website, I walked away convinced I didn’t have autism because I couldn’t relate to the image Autism Speaks’ was crafting. Each article, video, or webpage I visited left me feeling more and more uncomfortable; something wasn’t right about what they were doing. However, I assumed Autism Speaks, an advocacy organization, would provide accurate information on autism.
I still feel this discomfort regarding their message. So, why do I feel this way? One of the things that I began to learn when I entered graduate school was to challenge my warrants, or the assumptions that I hold. Upon looking at my warrants for Autism Speaks, I began to question and challenge my assumption that they were an advocacy organization for autistic people.
This led me to ask the question, what is advocacy? Now, with the rhetorical tools that I have at my disposal, I will analyze an artifact from AARP (an advocacy organization for elderly people) and an op-ed piece run by Autism Speaks in an attempt to identify if the cause of my discomfort relates to advocacy.
In order to discover if advocacy is the cause of my discomfort, I will analyze a public service announcement from AARP and an op-ed piece from Autism Speaks. AARP is as reputable in the world of elderly care as Autism Speaks is to the world of autism care. To analyze an artifact from AARP, then, will provide an artifact to juxtapose the two organizations and the motivations behind their messages of advocacy.
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).
Pentadic Analysis of AARP
In a public service announcement (PSA) on the radio, AARP points out how the process of families taking care of each other comes full circle: eventually, the children take care of the parents. The following is the transcript:
Little Girl: I want to thank my mommy for loving me so much, for taking me out to the park, for reading me books…
Young Girl: …For taking me to the doctor when I broke my foot in ballet rehearsal…
Teenage Woman: …For leaving me alone when I wanted to be alone and…
Adult Woman: …Now as a grown-up, I’m thankful for being able to take care of you, my dear mom, for having the chance to take you to the park, for reading those books we enjoy so much, for being able to take you to your therapies after you twisted your ankle. For understanding that sometimes you simply want to be alone.
Narrator: Roles change without us noticing and in your new role we help you help. Visit aarp.org/caregiving to get practical health and wellness tips to provide even better care for your loved one. Remember, visit aarp.org/caregiving. AARP, we help you help.
We can find the motivation behind the story in this PSA by using Burke’s Pentad.
- Act: Helping out the parent
- Scene: Home and Community
- Agent: Caregiver (Adult Child)
- Agency: Resources available (provided by AARP and advocacy organizations like it)
- Purpose: To help people who need help
This PSA specifically focuses on the purpose and act. They help people who need help (purpose) by helping the elderly parent (act). Everyone, be they directly involved or not, is supported and empowered in this PSA. The elderly parent is supported by their adult child, the adult child is supported by the resources available, and people in society are supported by now being aware that resources are available for when it comes time for them to take care of their parents.
Therefore, the definition of advocacy that I will be using in this paper is: (1) help people who need help and (2) ensure that everyone involved is empowered and supported—all the way from the caregiver to the person who needs help to the people in society who are not yet caregivers or people in need.
This PSA does just that: it helps, empowers, and supports the caregiver and her elderly parent as well as informs the community who is not yet impacted by the needs caused by aging.
Pentadic Analysis of Autism Speaks
On November 11, 2013, Suzanne Wright, the co-founder of Autism Speaks, wrote an op-ed piece entitled “Autism Speaks to Washington – A Call for Action.” It was written and published the day before Autism Speaks held a national conversation demanding the government develop a national plan for the “autism crisis” (para. 1). In it, she rhetorically sets up an exigency for why there must be a national plan about autism. Here is an excerpt from the piece:
Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.
These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely – 24/7.
This is autism.
Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.
This is autism.
On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally. Physically. And especially emotionally.
Maybe they have been up all night caring for their teenage child who’s having a seizure.
Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.
Maybe their child has been trying to bite them or themselves.
Maybe they can’t afford the trip to a doctor specializing in autism.
Maybe there is a waiting-list for ABA, speech and OT.
Maybe their insurance won’t pay.
Maybe they don’t have the money to pay a special lawyer to fight for school services.
This is autism. . . .
Close your eyes and think about an America where three million Americans [with autism] and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help. (para. 11-25, 40)
Before moving on to the pentadic analysis of the story told in Wright’s piece, let me point out that the last four criteria for what autism is have nothing to do with autism―they have to do with low socioeconomic status. Now, here’s the pentadic analysis on the story told in this piece.
- Act: Making life difficult for the parent (by breaking up marriages, making families go bankrupt, forcing parents to live in despair)
- Scene: Home
- Agent: Autism
- Agency: The Autistic
- Purpose: ?
This pentad doesn’t look anything like the pentad for the AARP PSA. That much is obvious, but a deeper analysis can explain where the biggest diversion is. The biggest diversion here is the purpose. The purpose in the PSA is to help those who need to be helped—part of the definition of advocacy. But what’s the purpose here?
There is no purpose here. Wright is focusing on the act and agent in her piece by blaming autism (the agent) for breaking up marriages, making families go bankrupt, and forcing parents to live in despair―in other words: autism seeks to destroy the family (the act).
To look at this explicitly from a narrative point of view, we have to ask ourselves, “Who’s the protagonist?” In the AARP PSA, it’s the caregiver and elderly parent. In Wright’s piece, it’s the parent/caregiver. Now, “Who’s the antagonist?” The PSA doesn’t really paint anyone or anything as the antagonist. But Wright demonizes autism by pointing out how it destroys families.
So, what is the purpose of autism’s actions here? There isn’t one. In other words, as Michael Caine’s Alfred says in The Dark Knight when giving an analogy of the Joker, Autism can’t be “bought, bullied, reasoned, or negotiated with…[it] just wants to watch the world burn.” In this way, Autism, as Wright portrays it, does not care about the consequences of its actions—it just seeks to destroy the family.
The pentad for Wright’s piece lacks the first part of the definition of advocacy I’m using: helping people who need to be helped. Is everyone involved empowered and supported—the second part of the definition of advocacy?
We’ve been talking about autism so far, which leads to the question, “where is the autistic person in this story?” By neurological association and analogy, the autistic person becomes the capital-A Autistic, the tool that autism uses to destroy the family. For thirty-nine paragraphs, Wright talks about how Autism negatively affects the parents and for all thirty-nine of those paragraphs, the capital-A Autistic is the tool that autism uses to cause these negative effects.
In the fortieth paragraph, she finally discusses how autism affects the Autistic: they are not able to do anything for themselves, even eat or cross the street. This is not empowering everyone involved; at best, this is only empowering the parents. At worst, this is empowering the parents by disenfranchising the autistic.
If this piece does not advocate for the autistic person, then what is Wright’s motivation in writing this? Awareness Months play an important part in answering this question.
Awareness months fall under two main categories: disease/death, or situational/event/abuse.
Here are just some of the awareness months that fall under disease awareness: breast cancer awareness month, glaucoma awareness month, eating disorders awareness week, and colorectal cancer awareness month. Most of the awareness months fall under this category.
Here are just some of the awareness months that fall under situational/event awareness: national winter sports TBI awareness month, Traumatic Brain Injury awareness month, sexual abuse awareness month, and domestic violence awareness month. This list is shorter than the diseases list.
Awareness months, therefore, are about preventing something negative. It would be a very difficult to make the argument that we should not prevent cancer, eating disorders, traumatic brain injuries, and sexual and domestic abuse. Therefore, the idea behind awareness months is to help someone who needs help by preventing the cause of that need—part of the definition of advocacy.
But, then there’s the following awareness months: disability awareness month, down syndrome awareness month, trisomy awareness month, and autism awareness month.
Should disabilities be associated with diseases, death, abuse, or situations―should they be prevented? To answer this, we have to go back to Wright’s piece and analyze it using terministic screens.
Terministic Screen Analysis of Autism Speaks
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).
Part of what I have done by revealing and challenging my warrants is also revealing and challenging the terministic screen that Autism Speaks uses: advocacy. By claiming that they are an advocacy organization, they are using a terministic screen that prevented me from looking at them from any other lens.
Now, let’s go back to Wright’s piece. In her second and third paragraph, Wright says “If three million children in America one day went missing – what would we as a country do? If three million children in America one morning fell gravely ill – what would we as a country do?” (para. 2-3)
She uses an analogy here to equate autism with kidnapping and grave illness. Kidnapping and grave illness can be associated with abuse and death, respectively. Therefore, in the first three paragraphs, Wright establishes how autism fits within the definition of awareness months: kidnapping is abusive/situation and grave illness is death/disease. Autism now needs to be prevented in order to help someone who needs help.
However, in the narrative Wright weaves, who is this person who needs help? The immediate answer that could come to mind is: the Autistic needs help. But in the pentad, the Autistic is the tool that autism uses to destroy the family. This destruction of the family causes suffering, requiring much help. But again, who is most impacted?
Well, for thirty-nine paragraphs, Wright expounds on how autism causes parents of autistic people to suffer. To cure autism, then, relieves the parents suffering thereby helping the parents. The parents are the group who are in need of help in this story.
The thirty-nine paragraphs dedicated to the parents, however, are sharply juxtaposed with the one paragraph that is dedicated to how autistic people are affected—and that paragraph is a gross overgeneralization of autistic people. Autistic people, according to that one paragraph, cannot take care of themselves at all—they live in a state of eternal infancy that drives their parents to despair.
Finally, let’s look at the terminology she uses for the people who care for the Autistic (e.g., the parents): care-takers. This is seems sharply juxtaposed to the term caregiver used in the AARP PSA: taker vs. giver. However, upon looking the definition of them up in the Oxford English Dictionary, a dictionary that gives the history of the definitions of a word, caregiver and care-taker both include the idea of someone taking care of someone else. However, look a the definitions closer and a major difference occurs. The definition of caregiver is, “a person, typically either a professional or close relative, who looks after a disabled or elderly person, invalid, etc.” (“caregiver”). The definition of care-taker is, “One who takes care of a thing, place, or person; one put in charge of anything” [emphasis added] (“Care-taker”). They both have the core idea of one who takes care of a person, but care-taker has an added part: one who takes care of a thing or a place. Using this term, then, lumps people in with things and places. Added to this, when care-taker is generally used today, it is thought to be the one who takes takes care of a thing or place (Maddox).
So, the decision to use the word care-taker implies that autistic people are things, not people. This definition fits in well with the image of Autism that Wright creates. A car cannot take care of itself just as a body cannot take care of itself. The owner of the car can take care of it when they are there, just as the owner of the body can take care of it when they are there. But if something were to happen to the owner of either, say a kidnapping, grave illness, or eternal infancy, then the car and the body would not be taken care of. So, a caretaker comes and takes care of the car and a caretaker comes and takes care of the body of the Autistic.
But think on this: autism cannot be separated from the autistic. As Jim Sinclair puts it, autism
colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person–and if it were possible, the person you’d have left would not be the same person you started with. (Autism is Not an Appendage para. 1)
Therefore, to cure autism is to cure autistic people of our identity—to eradicate autistic people.
Narrative – PART II: Reflection of the Results
And finally, after 8 years, I understand why I was disturbed by the image of autism that Autism Speaks crafts. I am able to see why, for 8 years, I thought I was autistic, but didn’t want to be because I didn’t fit this definition of the Autistic. I wasn’t an eternal infant, so I obviously wasn’t autistic.
Finally, after beginning to look at Autism Speaks critically using rhetorical tools, I saw them for what they really were: advocates, yes, but for the parents, not for autistic people. So empowered from this new perspective on something I had seen unquestionably for 8 years, I sought a diagnosis. In September of 2015, I received my autistic diagnosis and realized something.
I realized that for 8 years, I shied away from defining myself as autistic because of the implications. It meant that I was the tool that autism was going to use to destroy my family and make my parents live in despair. It meant that I was neurologically associated with a monster that just wants to “watch the world burn.” It meant that I needed to be cured of who I innately was, of my identity—that I needed to be prevented. But what was most demoralizing of all was that I needed to be eradicated.
This is the exigency of this topic. An advocacy organization is seeking to eradicate the very people they claim to be advocating for in order to help the parents. Why is this what and who they advocate for?
Plans for Expanding this Proposal into my Thesis
With this question in mind, I would like to look at how and why Autism Speaks has this ingrained ethos—or credibility. I will do this in two ways. First, I will apply Burke’s pentad and terministic screens to several other artifacts published by Autism Speaks and the Autistic Self-Advocacy Network, an advocacy organization run by and for autistic people. Second, I will use Foucault’s concepts of archaeology and genealogy combined with Bruno Latour’s Black Box and Burke’s terministic screens to trace Autism Speaks and the Autistic Self Advocacy Network back to their core idea.
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.
Bruno Latour’s Black Box. This is where Bruno Latour’s Black Box comes into play. In his book “Science in Action,” Latour explains that the Black Box is 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.
In other words, the Black Box is Foucault’s archaeology because it only focuses on the input and the output. However, my thesis will attempt to break open this box to reveal how 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.
Autiethnography. My thesis will be autiethnographic in order to illustrate how my life as an autistic person has been impacted by the artifacts that will be analyzed. I have chosen to base this thesis on an autiethnographic study because it will provide the exigency and relevance of my topic throughout. If these artifacts have impacted my life, then it stands to reason that they have had a similar effect on other autistic people. Image 1 below (a written conversation between a 7-year old autistic girl and her teacher) illustrates that I am not alone in having internalized the messages Autism Speaks continues to propagate.
|7-year-old Girl: Does being autism make me bad?
Teacher: What makes you wonder if being Autism makes you bad?
7-year-old Girl: grownups always say its hard being mum or dad if your kid is autism and it said on tv if your autism you hurt people. And kids who are autism have to be put in a gale [jail] to keep others safe or tied up.
Teacher: Do you think I believe these things are true, or that I would say them?
7-year-old girl: (All in caps with thick graphite) NO!
Teacher: What do you believe?
7-year-old girl: I don’t like hurting people. I dont like being scard [scared]. I would be scard [scared] in a gail [jail] room. I was born autism but that (underlined) doesnt mean I was born bad. Are you crying?
Teacher: Yes. I have happy tears that you know what is true; and I have sad tears because there are lots of people who don’t know what is true.
(I am Cadence)
Autism Speaks. (n.d.). About Us. AutismSpeaks.org. Retrieved 1 Oct. 2015, from https://www.autismspeaks.org/about-us/mission
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.
Caregiver. (n.d.). The Free Dictionary. Web. October 30, 2015, from http://www.thefreedictionary.com/caregiver
Caretaker. (n.d.). The Free Dictionary. Web. October 30, 2015, from http://www.thefreedictionary.com/caretaker
I am Cadence. “What ‘messages’ are children hearing – from ourselves, from other parents, at school, from media, and in the general community.” Facebook. 11 Nov. 2015. 11 Nov. 2015 at https://www.facebook.com/1032108113468280/photos/a.1034007243278367.1073741829.1032108113468280/1069384113074013/?type=3&theater
Latour, Bruno. Science in Action. Cambridge: Harvard University Press, 1987. Print.
Maddox, Maeve. “Caregiver vs. Caretaker.” Daily Writing Tips. n.d.
Sinclair, Jim. “Don’t Mourn for Us.” Our Voice. 1.3 (1993). Web. Retrieved 15 Nov, 2015 at http://www.autreat.com/dont_mourn.html
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.
Vongkeomany, Michael Anthony. “Caregiver Assistance (AARP) Full Circle 60 (2014) Ad Council Radio PSA.” Online video clip. Youtube. Youtube, 13 Nov. 2014. Web. Retrieved 10 Nov. 2015 at https://www.youtube.com/watch?v=I4UjeEnAnws
Wright, Suzanne. Autism Speaks to Washington – A Call for Action. Autism Speaks Point of View. 11 Nov. 2013. Web. Retrieved September 15, 2015 at https://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action