Thesis Proposal: Part XIV – Proposal 9

Prior to writing this proposal, my advisor asked me to use one monster quote from Wright’s piece, rather than what I was doing, which was using a crap-load of tiny quotes here and there.  This would allow me to keep her section shorter than the almost 7 or so pages it was before.

This document ended up being 13 pages single-spaced.

It took me almost three weeks to write this because it didn’t register in my brain how I was supposed to write this.  Then, one Wednesday night, I just sat at a table and drew up an outline.  Finally, it made sense to me.  I knew how and what I was going to write and it was going to be awesome!

I got so excited that adrenaline surged through my veins like crazy.  I figured out tiny parts here and there to mix into the proposal.  I had it, finally, I had written the final draft of my proposal!

I only got an hour of sleep that night because I was on such a roll (or is that I couldn’t sleep.  I got to my meeting with him the next day and he said, “It’s too simple.”

Huh?  How is it too simple?  You have been asking me to keep it simple for the last few weeks.  Of course, I didn’t say this because I was so heartbroken.  He also began again to delete and rewrite passages that I had written, which furthered me into this heartbreak.



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 and found a fascinating connection between Foucault and Autism Speaks.

 

Preliminary Study

[Description of what you’re doing in this section–looking at how a piece of discourse representative of how AS defines autism creates that definition by using Burke’s TS. In addition, show how two other pieces of discourse separate from AS but in dialogue or response to that definition and how those entities in turn use terministics screens that define autism as well, unfortunately in a way that may reinforce AS’s initial definition?]

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 in two ways: the first is by the single words that she uses and the second is by the paragraphs that she writes.  If she uses words or phrases that have negative connotations, then she represents autism as a negative.  When the words are combined together, they create the paragraph and thus begin to tell the story of what their autism is.  This story is then semiotically connected to the autism people think of when they hear the word and subsequently, it seeps into the image of autism.

Here is a quote from the article that illustrates how words 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 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)

I want to point out that the last four on this list and 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).  This is the representation of autism; these are the words and phrases she has crafted.

What is the story that she’s telling here of autism?  Autism depletes parents of their mental, physical, and emotional.  Autism forces parents to live in despair living moment-by-moment and in fear of the future.  Autism ultimately robs parents of their lives because they are simply existing, not living.  But what role do the autistic play in this story of autism?

While it may seem like there are two separate autistics here, there is really only one with two phrases.  The first autistic is the one who cannot do anything for itself (yes, itself).  It is an empty vessel, a docile body.  It cannot take care of itself in any way thus requiring parents to stay up to care for it depleting parents’ of their mental, physical, and emotional strength.  

Therefore, the autistic causes the bad things to happen.  The autistic is the one that makes parents stay up all night because of seizures.  The autistic is the one that forces parents to despair and live moment-by-moment in fear of the future.  Finally, the autistic ultimately robs parents of their lives because they are simply existing, not living.

So what is the image of autism?  The image represented here through words and told through paragraphs is one of a monster.  Something that every expectant parent should live in terror of because it is something that forces families to “split up, go broke, and struggle through their days” (para. 7).

 

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 looking at the whole paragraph, this story of autism becomes confusing due to his analogy: autism is a gift, but it is also the fire that burns us.  Fire destroys everything it touches.  So, on the one hand, autism is a gift, but on the other, autism is something that will destroy us?  Why does he see autism as both a gift and something that can destroy us?

The answer is he is looking at the same thing that Autism Speaks is: disability as capital-“O” Other.  In other words, disability as something that needs to be fixed.  I will expand on how I reached this conclusion in the theory section.

 

Autistic Self-Advocacy Network

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 the words that they choose because this is written by the Autistic Self Advocacy Network and Association for Autistic Community, both autistic led organizations.  In other words, this represents the image of autism most accurately because it is written by actually autistic people.

They also go about challenging the assumptions, or warrants, that Wright makes in her argument.  Autism is not, then, the things that they are challenging Wright in.  Autism is not a kidnap victim or just burdens to families.

They go on to ask for autistic-led organizations to be the ones that are included in national discussions.  Any conversation that excludes autistic voices must not be included in national discussions because autistic people deserve better.

What is the image of autism here?  The image of autism is new, it’s not based off an image that was created and maintained by Autism Speaks of disability as capital-“O” Other, it is created every minute of every day by every autistic person.  This is what autism is, Autism is what Autistic people make it, not what the neurotypical (those without autism) and neurotypical organizations like Autism Speaks makes it.

 

Awareness Campaigns? I think Not: Exigency of this Topic

So far, I have only been rhetorically analyzing the things that go into making the connotation of the autism.  But how does influencing the image of autism actually affect autistic people?  To begin understanding this, we must first rhetorically analyze Awareness Months.

Awareness Months

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, this is where Wright’s article comes back.  By specifically focusing on the beginning and paragraph 40.  In the beginning, she equates autism with kidnapping and grave illness by using an analogy to say that just as we would do everything we could to stop 3 million kidnapped or gravely ill children, so should we do that for this autism crisis.  

In paragraph 40, she reveals that autistic people cannot take care of ourselves.  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 or if you 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 autism means the autistic person cannot take care of themselves in any way, shape, or form, then any person who can take care of themselves is not autistic because autism means the autistic person cannot take care of themselves in any way, shape, or form.  This is what the autistic community has labeled “No True Scotsman” fallacy.

The idea of “No True Scotsman” is a definition of a Scotsman is given.  Then, a Scotsman stands up and disagrees because they are a Scotsman and part of the definition doesn’t fit them.  The person, group, or entity making the definition repeats what it said to begin with.  It doesn’t challenge the Scotsman directly, it just erases him by repeating what the definition of a Scotsman is.  This is an excellent rhetorical move because the mainstream society only hears about what autism is according to Autism Speaks, but never hears anything else because they keep repeating what autism is.

However, Robison attempts to challenge this image.  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 agreeing with Wright in a way.  They both say that parts of autism need to be fixed because of the disabling aspects.

Autism awareness seeks to prevent autism.  However, Autistic self-advocates have recognized this and groups like ASAN explicitly challenge Autism Awareness campaigns by creating Autistic Acceptance campaigns.

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 they 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 autistic people.

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 anyone searching the term “autism” will 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.

But how?  How do they do this?

 

Theory

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.

But before I bring out the third tool, I want to bring up one more quote from Latour, “A black box. It is because no more has to be said about it that it can be used to lead the reader somewhere else downstream, for instance to a hospital ward, helping dwarves to grow” (23).  So, a Black Box is very similar to the first rule of fight club: we don’t talk about what’s in the Black Box.  This lack of discussion and explanation leads the reader somewhere.  Discussion and explanations use terms, but this could be looked at as a termless terministic screen.

Kenneth Burke’s Terministic Screens. In his book “Language as Symbolic Action,” Kenneth Burke lays out a fascinating discussion on how the words we choose influence the way our reader thinks.  To tie this concept into something we have already talked about, we need look no further than the preliminary study.  I looked at the language they used and tied that language to the image of autism.  That analysis used Burke’s terministic screens.

However, terministic screens are going to pull double duty because they also serve as the black box.  The black box is a complex process, and what’s more complex than how language impacts people’s ideologies?  Not only that, but look once more at that quote and a Black Box influences the reader by leading them somewhere else.  That is definition of Burke’s terministic screens.

One analogy that Burke uses is that he once looked at several photographs.  They were all of the same object, but they were taken with different color filters.  Each one revealed something different about the same object.  This is the way it is with language surrounding concepts.  If we talk about autism as a menace, then it may influence the reader to assume that it is a menace.

Burke’s terministic screens not only give us a name, but it gives us a method to break open the ideological black boxes that lead to Autism Speaks.  Not only that, but they apply directly to Foucault’s genealogy.  How did we get to Autism Speaks?  Put another way, 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 not only going to apply this methodology to Autism Speaks, I am also going to apply it to the Autistic Self Advocacy Network in order to determine where the divergence in ideologies occurred.

 

Plans for Taking over the World one Ableistic Organization at a Time

I would apply this methodology to Autism Speaks in this proposal, but I have to leave something to the imagination so you’ll want to read my final thesis.  But if you want to see without any support what the ideological history behind Autism Speaks and the Autistic Self Advocacy Network is, feel free to read through the six planned chapters for my thesis.

  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
    1. Input (blackbox) Output
      1. Different way of using language to empathize with the world (statistical typicality) Difference [with a capital “D”]
      2. Difference (science) abnormality
      3. abnormality (science) disability
      4. disability (ableism) Other
      5. Other (science) Autism
      6. Autism (Ableistic science) Theory of Mind
      7. Theory of Mind (advocacy) Autism Speaks
      8. Autism Speaks (Ableistic advocacy) “Advocacy”
  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
    1. Input (blackbox) Output
      1. Different way of using language to empathize with the world (statistical typicality) Difference [with a capital “D”]
      2. Difference (science) abnormality
      3. abnormality (science) disability
      4. disability (science) Autism
      5. Autism (advocacy) Autistic Self-Advocacy Network
      6. Autistic Self-Advocacy Network (advocacy) Advocacy
  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

13 Weeks Remaining
12 Weeks Remaining
11 Weeks Remaining
10 Weeks Remaining
9 Weeks Remaining
8 Weeks Remaining
7 Weeks Remaining
6 Weeks Remaining
5 Weeks Remaining
4 Weeks Remaining
3 Weeks Remaining
2 Weeks Remaining
1 Week Remaining

Notes to self: How do I incorporate the internet piece?  Probably in the how to expand section.

 

Graveyard:

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.

 

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