Thesis Proposal: Part XVIII – Proposal 13

I decided to stick with what I had for the Pentad despite the recommendations by my advisor because it supported the argument that I was trying to make: Autism Speaks is not an advocacy organization for autistic people because they demonize autistic people.

During the meeting before this Proposal, my advisor told me that I needed to add the rhetoric to the first part of the narrative.  I disagreed because the rhetoric was in the second part of the narrative.

My idea was that the first narrative was me pre-rhetoric with, at most, a tiny bit of rhetoric at my disposal.  But not enough to actually tell me why I felt so uncomfortable with what I was reading at Autism Speaks.  The second narrative is now that I have this knowledge of why I was uncomfortable, now what do I think and how does it affect me?

We disagreed because he wanted me to write the first narrative with rhetoric, but that didn’t fit.  He raised his hands and said, “I’m not going to die on this hill, I’ll drop it” only to bring it back up again a few minutes later and try to convince me again.  I was not swayed by his arguments because I knew that I do talk about rhetoric later on.


 

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 actually pseudo-advocacy.

Autism Speaks describes itself as the “world’s leading autism science and advocacy organisation” (“About Us”).  I set out in my thesis to explore how advocacy is rhetorically constructed.  In this thesis proposal, I will set out to analyze what the advocacy that Autism Speaks looks like.  In the end, one thing will be clear: Autism Speaks seeks to cure autism because it negatively affects parent’s lives.

[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 Burke’s Terministic Screens and Pentad, 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.  This discomfort lead me to wonder why I felt this discomfort after looking at an organization that calls itself the “world’s leading autism science and advocacy organisation” (“About Us”)?  They wouldn’t steer me on the wrong path, would they?

But for now, to be continued…(on page ?)

Preliminary Study

In this section, I will be analyzing a public service announcement run by AARP, an advocacy organization for elderly people, 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 by focusing on five different aspects of the artifact: 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 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 the story in this public service announcement by using Burke’s Pentad.

  • Act: Helping out the parent
  • Scene: Society
  • Agent: Caregiver (Adult Child)
  • Agency: Resources available (provided by AARP and advocacy organizations like it)
  • Purpose: To help people who need help

The act is helping out the parent.  The scene is society.  The agent, or actor, is the adult child who uses AARP to help the parent.  This is based on the part of the transcript that I did not include in the quote above “AARP: we help you 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.  

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.  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: 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 public service announcement.  That much is obvious, but let’s look deeper at it.  Why doesn’t it look anything like the previous pentad?  It is because in the AARP piece, the motivation was in the purpose: to help those who need to be helped!

But there is no such purpose here.  What action is being done here?  There isn’t any, Wright is focusing on the act and agent in her piece by focusing on how autism (the agent) breaks up marriages, makes families go bankrupt, and forces 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.  Now, let’s ask, “Who’s the antagonist?”  AARP’s doesn’t really paint anyone or anything as the antagonist.  But Wright paints autism as the antagonist.  She does this by pointing out all of the things that it does to the parents.

So, what is the purpose of autism’s actions here?  We don’t know!  So, 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.

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.  Is the second definition of advocacy met: everyone involved is empowered and supported?

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 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.

Here are just 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 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.

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 ensure the audience sees the topic from the author’s perspective, thereby preventing 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 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 Revisited

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 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.  Why is this?

 

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 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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