Thesis Proposal: Part XIX – Proposal 14

We met every day during the week before I submitted my proposal.

For this proposal, I attempted to bring in some of what he said about the narrative piece.  I was going to bring in some rhetoric, but not much.  I was also going to lead the reader into why I was analyzing an AARP piece. I will admit that with this draft, I didn’t do that very well.

It was also at the meeting on Monday that my advisor told me that I shouldn’t use questions to help guide the reader into the next section.  When I asked him why not, he told me that some people view it as “lazy.”  Others view it as “unacademic.”

However, asking a question is much simpler for both the writer and the reader than writing an entire page of rhetorical transition.  


 

 

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’s effects autistic people’s lives.  In the end, one thing will be clear: Autism Speaks seeks to cure autism because autism negatively affects parent’s lives.

Drawing from disability studies and the rhetorical perspectives on Burke’s Terministic Screens and Pentad, 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 can people identified as “in need of help” use rhetorical moves to advocate for themselves.  Finally, how does Autism Speaks establish itself as an authority qualified to advocate for the autistic?

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 autism through Google and the first search result was always Autism Speaks.  

Each time, I would look at their website and read through what autism was.  And each time, I would walk away, deciding I didn’t have autism because I couldn’t relate to the image Autism Speaks’ was crafting.  I walked away feeling uncomfortable because something wasn’t right about this.  However, I assumed Autism Speaks, an advocacy organization, knew what they were talking about.

I still feel this discomfort regarding their message.  So, why do I still feel this way?  To answer the question, I will begin by analyzing a public service announcement from AARP (an advocacy organization for elderly people) that did not make me feel uncomfortable.  Then, I will analyze an Autism Speaks’ artifact in an attempt to identify if the cause of my discomfort relates to the way they rhetorically construct advocacy.

Preliminary Study

In order to do this, I will use the pentadic analysis to analyze a public service announcement run by AARP (an advocacy organization for elderly people) and an op-ed piece run by Autism Speaks.  Kenneth Burke developed his pentad to determine what the motivation of an artifact is (be it event, document, article, etc.) by focusing on five different aspects: act, scene, agent (actor), agency (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

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 to the people in society who are not caregivers or people in need.

This PSA does just that: helps, empowers, and supports the caregiver and their elderly parent as well as informs the community who are 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 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)

Here’s the pentadic analysis about 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: ?

I want to focus on how this pentad doesn’t look anything like the pentad we did for the AARP PSA.  That much is obvious, but a deeper analysis can explain where the biggest diversion is.  Why doesn’t it look anything like the previous pentad?  It is because in the PSA, the motivation was in the purpose: to help those who need to be helped!

But there is no such purpose here.  What is the purpose of the action?  There isn’t any, 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.

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, let’s ask, “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.

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.

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.

So far, awareness months 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.  

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.

Should disabilities be associated with diseases or situations thereby providing an exigency for preventing them?  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.

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 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 sharply juxtaposed to the term caregiver used in the AARP PSA.  The definition of caretaker is, “a person who is in charge of a place or thing, esp in the owner’s absence” (http://www.thefreedictionary.com/caretaker).  The definition of caregiver is, “An individual, such as a family member or guardian, who takes care of a child or dependent adult” (http://www.thefreedictionary.com/caregiver).

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)

To seek to cure autism is to seek to cure us of our identity.

Narrative – PART II

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 gross overgeneralization 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 with this new understanding, 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 a new insight took hold of me.

The insight 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.”  But above all, 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 to help parents.  Why is this what and who they advocate for?

 

Plans for Expanding this Proposal

With this question in mind, I would like to look at how and why Autism Speaks has this ingrained ethosor 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 this is intrinsic to the mission and identity of their 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 used for this Autism Speaks artifact.

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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