One of the things that we discussed was moving away from the representation, narrative, image, and agency of autism. We would do this by focusing on rhetorical theories – specifically, what Burke calls the Pentad.
Everything is the same until the section: Exigency Awareness.
The subject of my thesis is how autism advocacy organizations use digital media to influence the representation, narrative, agency, and identity of autism, and consequently autistic people.
Looking at the discourse produced and circulated online by two autistic advocacy organizations, I investigate how both autism and the autistic are rhetorically constructed through digital media. Perhaps the most influential and well-known authority on autism, Autism Speaks–a community of parents and grandparents organized to find a cure to autism–has created an online presence that substantially impacts the way that the general public understands this neurological condition. Through a variety of awareness campaigns, Autism Speaks has discursively constructed autism as a menace to all who encounter it, causing a national crisis. Rather than enabling autistics to enrich their lives, the public is programmed to support Autism Speaks’ crusade to eliminate both autism and, by neurological association, the autistic. Despite this organization and its supporters’ good intentions, ultimately, Autism Speaks advocates only for improving the lives of the parents of autistics, not the autistics themselves.
There are, however, pockets of dissent and resistance to the frame of autism as a burden, a curse, or a scourge to be eradicated. Among its other activist campaigns in both virtual and real-world environments, the Autistic Self Advocacy Network (ASAN) has challenged Autism Speaks’ attempts to portray the autistic as either a menace or a burden to society (especially to their parents) by discursively reclaiming the identity of those defined as “actually autistic people.”
[Ack! I am activating the active actor’s attempt to actually actuate the activistic act of activism’s activity of acting.]
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 establish itself as an authority qualified to tell the story of the autistic? Second, how have autistic self-advocacy groups such as ASAN used the Internet and digital media to both resist how Autism Speaks represents autistics as well as empower autistics to define their own identity.
Accordingly, 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 and the subsequent response to it; provide a rationale and overview of the full study; and describe the larger societal implications and significance of this project.
Rhetoric: A New Lens to See Autism Speaks in a New Light
Last year, I began to work on my presentation for the Great Plains Alliance in Computers and Writing and I presented on autism and identity formation through the internet. How is identity formed in autistic people? For the fifth time in 7 years, I wondered if I had autism. After typing in autism into Google, I clicked on the first search result: Autism Speaks.
I had looked at their website in the past when situations came up that made me wonder if I was autistic. Every time, the message I read made me terrified about the possibility of being autistic. However, now I was seeing this same website from the critical lens of rhetoric. I saw what they were really doing and it terrified me again; not about being autistic, but about the image of autism they were really making the public aware of: autism as a monster, as a menace. But another thing, more rhetorical, came to mind: they have no warrant for any of these claims. Autism Speaks lacks the support to their assumptions.
Several months later, I read an article entitled “Autism and Rhetoric” by Paul Heilker and Melanie Yergeau and I saw autism in a whole new light. Autism is rhetorical, disability though it may be, it is also a rhetoric, a way of being in the world through language. They call upon rhetoricians to recognize that “every public discourse on autism is begging for rhetorical analysis.” There is no more renowned a public discourse entity than Autism Speaks and so, I heeded their call.
In this section, I will begin by rhetorically analyzing a piece of discourse from Autism Speaks written by its co-founder, Suzanne Wright. This piece is representative of how Autism Speaks uses terministic screens to create the image of autism. I will also analyze two other pieces that are separate from Autism Speaks who respond to and discuss the image of autism that Wright creates. I will show how they use terministic screens as well to create their image of autism, but unintentionally reinforce the definition created by 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. In it, she rhetorically sets up the exigency for why there must be a national plan.
I was especially curious how what she wrote influences society’s image or identity of autism. This is done using what Kenneth Burke calls “terministic screens.” In his book “Language as Symbolic Action,” Kenneth Burke lays out a fascinating discussion on how the words the author uses influence the way the reader thinks. The words we use make the reader look at the artifact we are discussing in only the way we are discussing it.
The analogy he uses is how he once looked at several photographs of the same thing, but each one had a different filter. The red only showed what was red and no other color, the blue only blue and no other color. Therefore, you cannot see any blue when you are looking at the image from the red filter. Therefore, words are the filter or lens with which we can get our audience to look at something from our perspective.
Here is a quote from the Wright’s piece that illustrates how she uses terministic screens to influence the image of autism:
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)
The last four on Wright’s list in the quote has to do with low socio-economic status, not autism. However, Wright may respond to this by saying that autism caused them to have a low socio-economic status based on her statement “we have let families [with children with autism]…go broke” (para. 7).
What terministic screens does she use to represent and influence the image of autism? She uses an implied analogy throughout that she cements in the last paragraph of the quote. It is one of autism as eternal infancy. Infants cannot dress themselves, eat independently, or use the toilet. Autistic people cannot either. An infant cannot take care of themselves and neither can the autistic. This is how she represents autism: as eternal infant that can never take care of themselves.
Where is the autistic in this quote? It takes 40 paragraphs for Wright to finally discuss how autism affects autistic people, the rest is discussing how autism affects parents.
John Elder Robison’s Response
John Elder Robison, an autistic person who worked for Autism Speaks at the time, responded to Wright’s article two days later by writing a blog post announcing his resignation from the organization.
I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism – as a neurological difference – confers both gift and disability on everyone it touches. It’s the fire [sic] the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way. (para. 6)
What’s the representation of autism here? He is crafting the image of autism as a disability, but also a gift. This seems vastly different from the image of autism as only a disability that drives parents into despair. However, upon analyzing the analogy, the following conclusion about autism can be reached: autism is a gift, but it is also the fire that burns us.
Fire does not just burn everything it touches—it destroys. So, on the one hand, autism is a gift, but on the other, autism is something that will destroy autistic people. Why does he see autism as both a gift and something that can destroy us? He’s looking at the same thing that Autism Speaks is: autism as a disability that needs to be fixed.
Autistic Self Advocacy Network (ASAN)
ASAN is a self-advocacy organization that is run by and for autistic people. They seek to promote acceptance among society for autistic people and build an autistic culture. They are frequently in dialogue with things that Autism Speaks publishes or is a part of. However, Autism Speaks has, to date, never engaged in dialogue with ASAN.
ASAN also responded to Wright’s piece with a very short four paragraph statement. The following is an excerpt from it.
This week, Autism Speaks co-Founder Suzanne Wright announced the opening of the Policy Summit by characterizing autistic people as kidnap victims and our families as nothing more than victims of tragedy and burden. She cited inaccurate and offensive statistics claiming that Autistic people cost our nation tens of billions of dollars annually. She does this as her organization devotes only 4 cents on every dollar donated to them to supporting autistic people and our families. She does this as her organization supports pity, fear and segregated housing and service-provision in their advocacy. Is this the organization that we want speaking on our behalf? We think not. (para. 3)
What is the representation of autism here? It is partially the words that they chose because this is written by autistic people. In other words, this represents the image of autism because it is written by actually autistic people. The other part of the representation is how they define by autism by what it is not: everything that Wright said. To do this, they use the same words that she uses and, according to George Lakoff, this is not a good idea because the only thing the audience hears is what Autism Speaks said (INSERT LAKOFF CITATION HERE).
In other words: what is autism? ASAN may respond, with something to the lines of “It’s not what Autism Speaks says it is.” In this particular document, they do not define autism explicitly by using their own terms. However, I will be analyzing several of their documents in my final thesis to determine if they do define autism explicitly in their own way.
Autism Speaks is the self-described “World’s leading autism science and advocacy organization” (“About Us” para. 1). Their mission is “to change the future for all who struggle with autism spectrum disorder…funding global biomedical research into the causes, prevention, treatments and possible cure for autism” (“Mission” para. 1-2). So, Autism Speaks is an autism advocacy organization that seeks to cure and prevent autism. How do they go about doing this?
We have begun to answer this question by looking at the representation of autism. Now, we must understand a second piece that influences image: story. To analyze the story Wright tells about autism, we must use Kenneth Burke’s Pentad to analyze autism’s motives. The idea behind the Pentad is that we will seek to understand the motives behind something by looking at the act, scene, agent, agency, and purpose of something. In this section, I will conduct a pentadic analysis of Wright’s article and connect Wright’s article to awareness months.
Pentadic Analysis of Wright’s Piece:
Here is a quick summary of the pentadic analysis on the motivation of autism according to Wright’s article.
Act: Autism destroys the family
Scene: The Home
Agency: The Autistic Person
The act that occurs in her article is that autism destroys the family. This is based on several quotes from her article such as, “we have let families [with children with autism] split up, go broke, and struggle through their days and years” (para. 7). Nearly every part of her piece is about how autism destroys parents lives.
The scene is that autism destroys the family in the home.
The agent is who or what is doing this and that is Autism. This is evidenced by her bolded “This is Autism.” All of the actions that destroy the family are surrounded by the idea that they are caused by autism.
The vehicle is the autistic child. This is where the exigency begins, this is where this discourse on the image begins to affect the autistic child. They are the ones that are supposedly the tool with which the Autism destroys the family. So, it’s autism that destroys the family, but it is the autistic child that also destroys the family.
There is no explicit purpose in Wright’s piece. She just states that this is what autism is, but she does not say why this is what autism is.
The image of autism is something that seeks to destroy the family without any known purpose. It is something that expectant parents must live in terror of, lest they have a child with autism and simply exist rather than live. In other words, autism is a menace, a monster.
Autism Speaks strives to bring awareness to autism. Many in the Autistic Community demand that we move beyond awareness to acceptance. Upon hearing this, I wondered why and just so happened to glance at the calendar.
At the bottom, it read, “Breast Cancer Awareness Month.” I grabbed the calendar and rifled through it and saw the following other awareness months: Domestic Abuse Awareness Month, Sexual Assault Awareness Month, Sudden Infant Death Syndrome Awareness Month, Heart Attack Awareness Month and many more.
Awareness months are all associated with either (1) death or (2) abuse. In other words, Awareness Months are associated with things that we want to get rid of or prevent. There are very few people out there who would think that we shouldn’t prevent death, abuse, and cancer whenever possible.
Then, I got to April and it read, “Autism Awareness Month.” Curious, I did a websearch and came up with hundreds of awareness month names. Nearly all of them were associated the criteria for Awareness Months: death or abuse. But autism was also thrown into the mix.
Is autism associated with death or abuse? Nope! However, by specifically focusing on the second and fortieth paragraphs, Wright’s article reveals how autism fits this criteria. In the beginning, she equates autism with kidnapping and grave illness. Paragraph forty says that autistic people cannot take care of themselves at all.
In paragraph 40, she reveals that autistic people cannot take care of ourselves, that autistic people live in a state of eternal infancy. Many people in society think that if you can’t take care of yourself, you might as well be dead. If you have been kidnapped, have a grave illness, now autism fits within the criteria for Awareness Months. Grave illness results in death, not being able to take care of yourself leaves you susceptible is associated with death, kidnapping fits the criterion for abuse. Now that Wright has created this image of autism, autism now fits the criteria of awareness months. And remember that awareness months can basically be reworded to “prevention months.”
The image Wright weaves not only makes autism fit within this criteria, but it also begins to erase and mute autistic people from any discourse surrounding autism. If autistic people are eternal infants, then they should not be able to talk and if they can talk, then they are not really autistic or they are not like the kind of autistic that Autism Speaks advocates for.
However, Robison attempts to challenge this image of autism as eternal infant and monster. Autism is a gift and who would want to prevent a gift? A gift does not fit within the criteria for Awareness Months. But autism is also a fire that destroys, and we would want to prevent a fire. So, Robison tries to challenge Wright’s thoughts and ends up partially agreeing with her: autism needs to be fixed because of its disabling aspects. This reveals their motivation, to understand her motivation, let’s do another pentadic analysis.
Act: Pursue the cure
Scene: Ableist society that craves normality
Agent: Ableistic people
Agency: Autism Awareness Campaigns
Purpose: Cure/eradicate autism
By crafting the image of autism as they did, Autism Speaks can go forth publicly in their attempt to cure autism. But think on this, autism and the autistic person are inseparable. Autism is an inherent and inextricable aspect of an autistic person’s identity because it influences the way we view and interact with the world. To cure autism is to cure an autistic person’s identity which is the equivalent of the eradication of the autistic person.
I think back on all the times that I looked at Autism Speaks’ website before my autistic diagnosis. I was so disturbed at the possibility that I may be autistic because that meant that I was less than, that I was capital-“O” Other, that I should be marginalized, muted, and erased; but above all, it meant that I needed to be eradicated.
This is the exigency of this topic, if the first search result on Google is Autism Speaks, then many people will search the term “autism” and read Autism Speaks’ materials without the tools that I have now. And they will walk away with one message: Autism and autistic people need to be eradicated.
I just explained why they do seek this. But how? How do they do this?
My thesis will set out to answer this question. In this section, I will outline the tools and summarize how I will get to the answer. To get there, we must first understand several rhetorical constructs: (1) Foucault’s concepts of genealogy and archaeology, (2) Bruno Latour’s Black Box, and (3) Kenneth Burke’s Terministic Screens.
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 sum that up, 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? Not until we get our third tool.
Kenneth Burke’s Terministic Screens. Burke’s terministic screens gives us a method to break open the ideological black boxes that lead to Autism Speaks. Not only that, but they also apply directly to Foucault’s genealogy. What terministic screens were applied to the input ideas and what came out?
Conclusion. To sum it up, Foucault’s archaeology looks at the discursive creations of an idea. Latour’s Black Box does the same thing, but both of these only focus on what ideas led up to the current idea so it can’t tell us how that idea came to be. But this is where genealogy comes in and begins to solve this conundrum. Burke’s Terministic Screens also solve this when they are applied to Latour’s Black Box.
I am going to apply this methodology to Autism Speaks and the Autistic Self Advocacy Network in order to determine where their ideologies separated.
Plans for Taking over the World one Ableistic Organization at a Time
At this time, I am anticipating my full study to consist of … chapters. Below, I outline and describe the components of my thesis as I currently envision them. I also include a generalized timeline of when I expect these chapters to be completed next semester.
- Outline my main argument
- Establish the exigency of my subject
- Provide a forecast statement for the overall thesis
- Rhetorical Analysis of several Autism Speaks documents looking at
- How they represent autism
- How they narrate autism
- How their narration and representation of autism impact the image, or identity, of autism
- How all of this impacts the agency allowed to autistic people
- Genesis Ideology of Autism $peaks
- Counter-example: Rhetorical analysis of Autistic Self-Advocacy Network documents looking at:
- How they represent autism
- How they narrate autism
- How their narration and representation of autism impact the image, or identity, of autism
- How all of this impacts the agency allowed to autistic people
- Genesis Ideology of the Autistic Self-Advocacy Network
- Cement the connections between subject positioning, rhetorical maneuvers, and writing as social action within advocacy
- Synthesize why I believe these connections are useful and relevant to the way we approach public discourse surrounding autism
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Notes to self: How do I incorporate the internet piece? Probably in the how to expand section.
Wright defines autism as it impacts the lives of the parents of children with the condition. The autistic is the wild card, the vessel or vehicle for autism to disrupt the lives of the parents and the family. The autistic is lost in the narrative. If this letter was looked at as a conventional story, it would be clear that autism is the antagonist and parents the protagonist; autistics are at best the victims if really seen at all. They are largely invisible, practically ghosts that haunt the parents’ every waking moment, reminding them of the healthy, normal, real children they didn’t get. The autistic, then, may be human, but it is only a version of humanity that resembles perpetual infancy.
In response and resistance to Wright’s statement, JER uses two contrasting metaphors to characterize autism. The first seeks to bring identity to the autistic; the second characterizes the difficulties that autistics face along with their families. The primary difficulty with these metaphors, however, is that, like in Wright’s characterization, autistics are defined by autism and its effects. What is missing is autistic’s humanity—they are defined for society by their condition. Although autism may be revealed to have gifts in which it bears to the world through the individual autistic, that gift comes with a steep price of destruction to the social fabric of society, namely through the family.