Thesis Proposal: Part XVII – Proposal 12

It was at this point that I started having to save my drafts as a different Google Doc because when we would meet, my advisor would change nearly everything in order to show me how to write in the dominant discourse of rhetoric.

Of note, the biggest change he made was on the Pentad.  I was confused walking out of that meeting because, while the Pentad he was using made sense  generally speaking, it did not make sense from the perspective of my writing.

My writing has, at times, been described as very succinct.  It is almost impossible to add anything in or take anything out without the whole paper falling apart.  The changes he was making did not fit with the whole scheme of everything that I had written. If I had gone with them, I would have had to start from complete scratch and I felt that what I had was the best reflection of MY ability as a rhetorician, as an academic, as a person.


 

 

The subject of my thesis is how the practice of advocacy is rhetorically constructed in both organizational and cultural contexts and what effects may occur when what appears to be advocacy is not.

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.

[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, have any autistic self-advocacy groups used the Internet and digital media to both resist how Autism Speaks represents autistics as well as empower autistic people 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; provide a rationale and overview of the full study; and describe the larger societal implications and significance of this project.


Narrative

As I was researching for a presentation on 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 would search autism through Google and the first search result was always Autism Speaks.  They crafted an image of autism that I could not relate with at all: one of autistic people as unable to take care of themselves at all.

In the past, I would look at their website and read through what autism was.  I would walk away, deciding each time that I didn’t have autism because their message of what autism was made me feel terribly uncomfortable.  But why did I feel this discomfort after looking at an organization that calls itself the “world’s leading autism science and advocacy organisation” (“About Us”)?

Preliminary Study

In this section, I will be analyzing a public service announcement run by AARP and an op-ed piece run by Autism Speaks using Pentadic Analysis.  Kenneth Burke developed his Pentad to determine what the motivation of a discursive artifact is.

Pentadic Analysis of AARP

In a radio public service announcement, 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 a section of the transcript:

Little Girl Speaking: I want to thank my mommy for loving me so much, for taking me out to the park, for reading me books. (In unison with young girl) For taking…

Young Girl: For taking me to the doctor when I broke my foot in ballet rehearsal.  (In unison with teenage woman) for…

Teenage Woman: For leaving me alone when I wanted to be alone and (In unison with adult woman) now…

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 this public service announcement using Burke’s Pentad.  The Pentad looks at five different parts: act, scene, agent (actor), agency (Tool that the agent/actor uses to perform the act), and purpose (of the act).

  • Act: A child become an adult, recalling the help a parent gave her, and then recognizes that she is in a position to help her aged parent [this is advocacy: the caregiver giving care to the person in need of help]
  • Scene: The child/adult recognizing the help of a parent
  • Agent: The child/adult
  • Agency: The resources available to bring comfort and aid (eg, book to read, car to transport, space to give)
  • Purpose: Adult children have a duty to care for their elderly parents who need their assistance (just like the parent gave the child for the same reasons, events, etc.)

By using the ratios of act::agency and agent::purpose and The pentadic analysis of the AARP PSA clearly defines a sense of duty (purpose) for the adult-child (agent) to perform. The cultural values of help and support in the context of a family makes clear that parents advocate for their children and, at some point much later, adult children then return the favor, advocating for their elderly parent.

The purpose of this public service announcement and organization is to advocate for people who need help.  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.  

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 to counter the effects of autism.  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)

Let’s do another pentadic analysis about the story told here.

  • Act: Protagonist: Parents struggling to care for an autistic child [Antagonist: Autism taking over the lives of parents]
  • Scene: Home [Homes of parents with autistic children across the nation]
  • Agent: Parent (they are clearly the doers; autism is described as an effect) [Autism–it is doing this to the parents]
  • Agency: Parents’ depleted resources (including their sleep, pocketbook, time, etc.) [Infant-like Autistic child]
  • Purpose: ? [?] Sympathy for the parent?

By using the ratios of act::agency and agent::purpose

There are various passages in both the quote above and throughout the full document where she emphasizes how autism, the agent, breaks up marriages and bankrupts families.  In other words, autism destroys the family.

It destroys the family from the inside: the home.  Autism is the agent and it uses the autistic person to destroy the family.  But what about the purpose?

There is no obvious purpose in this piece.  There is no reason explicitly given that Autism would seek to destroy the family.  As Michael Caine’s Alfred says in The Dark Knight, Autism can’t be “bought, bullied, reasoned, or negotiated with…[it] just wants to watch the world burn.”  In this way, autism does not care about the consequences of its actions—it just seeks to destroy the family.

When this pentad is compared to AARP’s pentad, we can see that the purpose of helping people who need help―part one of the definition of advocacy―is not there.  Part one of the definition is not met, but what about part two: everyone involved is empowered and supported.

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.

Why is this the story that Wright chooses to tell?  To begin to answer this question, we have to rhetorically analyze Awareness Months.

Awareness Months

If you take a look at awareness months, you will see that they fall under three different categories: disease, situational/event, and disability awareness.

Some of the awareness months that fall under disease awareness are: breast cancer awareness month, glaucoma awareness month, eating disorders awareness week, and colorectal cancer awareness month.  Most of the months fall under this category.

Some of the awareness months that fall under situational/event awareness are: 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.

So far, awareness months are about preventing something negative.  It would be a very difficult to make the argument that we should not work to 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 needing help.  

But, then there’s the third category of awareness months: disability awareness months like disability awareness month, down syndrome awareness month, trisomy awareness month, and autism awareness month.

Are disabilities diseases or situations that should 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 that states that the words the author uses influence how the reader/audience thinks about the topic that is being written about.  It is a set of terms, phrases, or analogies that are used to prevent the audience from seeing that topic from another viewpoint.

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, but who is this person who needs help?  In the narrative she weaves, this person who needs help is the parent.

For thirty-nine paragraphs, she expounds on how autism causes parents of autistic people to suffer.  To cure autism, then, relieves this suffering and helps these parents. These thirty-nine paragraphs are sharply juxtaposed with only 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.

After 8 years, I finally 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 felt I wasn’t because I didn’t fit this gross overgeneralization of the Autistic.  

But I also realized that for 8 years, I shied away from defining myself as autistic because of the implications it meant.  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 wants to “watch the world burn.”  But above all, it meant that I needed to be cured of who I innately was—that I needed to be prevented, eradicated.

Plans for Expanding this Proposal

With all of this in mind, I would like to look at how and why Autism Speaks has this ingrained credibility.  I will apply Burke’s Pentad and a cluster analysis of terministic screens to several other documents that Autism Speaks has published in order to determine if this op-ed piece is just a one-time occurrence or if is this intrinsic to their mission and identity as an organization.

I will also search for other autism organizations to find if they follow both criteria for advocacy: (1) the organization helps the people who need help and (2) empowers everyone involved.  Currently, I plan on analyzing the Autistic Self-Advocacy Network (ASAN) by applying the same analyses that I will use for Autism Speaks documents.


Chapters

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.

  1. Introduction
    1. Outline my main argument
    2. Establish the exigency of my subject
    3. Provide a forecast statement for the overall thesis
  2. Rhetorical Analysis of several Autism Speaks documents looking at
    1. How they represent autism
    2. How they narrate autism
    3. How their narration and representation of autism impact the image, or identity, of autism
    4. How all of this impacts the agency allowed to autistic people
  3. Genesis Ideology of Autism $peaks
  4. Counter-example: Rhetorical analysis of Autistic Self-Advocacy Network documents looking at:
    1. How they represent autism
    2. How they narrate autism
    3. How their narration and representation of autism impact the image, or identity, of autism
    4. How all of this impacts the agency allowed to autistic people
  5. Genesis Ideology of the Autistic Self-Advocacy Network
  6. Conclusion
    1. Cement the connections between subject positioning, rhetorical maneuvers, and writing as social action within advocacy
    2. Synthesize why I believe these connections are useful and relevant to the way we approach public discourse surrounding autism

Projected Timeline

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