Thesis Proposal: Part XII – Proposal 7

I just wanted to let y’all know I’m defending my final thesis proposal today!  I’m terrified.  You’ll be seeing the final thesis proposal in 9 days.

At this point, my advisor told me to write for me, so I should write it for as many pages as I needed to. He also took the introduction from my previous proposal and rewrote it in an attempt to show me how I should be writing it.

The comment I received on this was that it was a tad long, but that was okay because it was how I wrote.  It was 23 pages single spaced!

My advisor ended our meeting like he always ended our meetings, by saying, “Keep it simple.”


 

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.

 

8 Years of “Close, but no Cigar”

8 years ago, I was a young, 18-year-old college student learning my way toward a degree in special education.  In my freshman year of college, I had to take a class on the foundations of special education.  In it, we learned about learning disabled students, emotional/behavioral disordered students, developmentally delayed students, and autistic students to name just a few.

I learned about each of these in that order and wrote down notes so I could know what strategies work best.  But then, we got to the autistic students section and I began to see something that I had never realized before.  As we learned the criteria for autism, I began to recognize many of the criteria for autism on the Diagnostic and Statistical Manual IV (DSM-IV) in myself.

I remember driving home with my mom during Winter Break of freshman year sitting in the passenger’s seat trying to figure out how to tell her.  Eventually, I just blurted out, “Mom, I think I have autism.”  She chuckled for a bit until she realized I was being completely serious.

“But Sam, autistic people don’t talk.  You do.”

Armed with the knowledge of what I had learned the previous semester, I said, “But autism is a spectrum. It’s not just autistic people who don’t talk, there are some who do.  It’s called Asperger’s Syndrome.”

We drove the rest of the way in silence as we both thought about autism.  I decided to ignore the similarities because I didn’t see a point to getting diagnosed.  Not only that, but there was no way that I was autistic.

Three years later, in the summer between my Junior and Senior year, I worked at Camp Friendship, a camp that works with disabled people between the ages of 5 and 90.  I became known as the “Autism Whisperer” because I worked so well with the autistic campers.  My most vivid memory was when I walked in on several counselors force-feeding a non-speaking 90-year-old autistic camper who understably spit it all back into their faces.  I stopped them and told them that I was going to take over.  I was exhausted at that point because the noise in the cafeteria seemed defining to me and the fluorescent lights above me didn’t do anything to help.  I asked if we could go outside to eat and he stood up without hesitation.  We found a nice, shady spot under a tree and I put some food on the spoon and told him, “Whenever you are ready, guide the spoon to your mouth.”  I sat there for about 30 seconds and he slowly reached out and guided the spoon to his mouth.  “I think I know what your going through.  It’s the consistency, right?”  He nodded and I continued, “Growing up, I would do the same thing when I had to eat vegetables.  I still do the same thing!”  The light-bulb lit up again and I wondered if I had autism.

Curious, I looked up autism that night.  The first search result was Autism Speaks website, which I had heard of during the past three years.  I read through several of their articles and began to decide that I was not autistic.  I retreated from the idea that I was autistic because they portrayed an autism that terrified me.  An autism that needed to be fixed because most autistic people were nonverbal and low-functioning.  But I wasn’t either of those things.

So, I put the idea of me being autistic into the back of my head again for another two years.  In my first six weeks of teaching special education, my supervisor was talking to me and suddenly stopped and asked, out of the blue, “Are you autistic?”

Taken somewhat aback, I responded, “Possibly, why do you ask?”

“You have a lot of traits that are very similar to my husband, who’s also autistic.”  And thus, the idea of me being autistic came into my mind once again.  And once again, I searched what autism was and again found Autism Speaks’ website.

This time, I was even more terrified of what I found.  They portrayed autism not just as a bad thing, but as a sort of monster that waited until you least expected it to creep up and kidnap your child leaving a screaming empty husk of nothingness behind.  And for the third time, I put it into the back of my mind, but not so far back as to never think about it.  Every few weeks, I would think about it and put it aside in my mind.

Last year, I began to work on my presentation for the Great Plains Alliance in Computers and Writing and I wanted to do a presentation on autism and identity.  How is identity formed in autistic people?  Yet again, I began to wonder whether or not I had autism.  Once more, I looked at the Autism Speaks website.  But now, I had a strong arsenal behind me: rhetoric.  I looked at Autism Speaks, the same site I had looked at twice before and walked away deciding I didn’t have autism because of what it did, and it was fear-mongering.  Every awareness campaign was rife with making autism into a 21st century monster.

Several months later, I read an article entitled “Autism and Rhetoric” by Paul Heilker and Melanie Yergeau and I saw autism in a new light.  In their article, they say, “every public discourse on autism is begging for rhetorical analysis.”  There is no more renowned a public discourse entity than Autism Speaks.


Preliminary Study

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 “On the eve of Autism Speaks’ first-ever national policy and action summit in Washington, D.C.” (Blurb).  The piece goes on to say that the American government must come up with a plan to help every child with autism and their families.

Let’s look at the way Wright begins the article.  She begins by writing “This is the week America will fully wake up to the autism crisis” (para. 1), and goes on to give two analogies. “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).  Using these analogies implies that autistic people are missing and gravely ill.  However, just because it is an analogy doesn’t mean that autism and kidnapping and grave illnesses are the same thing.  Just wait, though!

She goes on in the next paragraph to say that we, as a nation, would declare martial law.  “We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made” (para. 4).  So, just as we would do this for three million children who went missing and three million children who fell gravely ill, we should do this for autism.  

This leads directly into her next point, “Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing” (para. 6).  It is at this point that Wright puts her full views out there explicitly without the use of analogy.  If three million children disappeared, we would have lost touch with them and Wright is saying that we have lost touch with autistic children.  Therefore, Wright is saying that the analogy is not just an analogy, kidnapping and grave illness is equivalent to autism.

These next parts are where Wright really begins to show how Autism Speaks influences, if not controls, the representation, narrative, identity and agency of autism and the autistic.  The following things are caused by autism: families split up, go broke, and struggle through their days and years.  It is curious that they do not talk about what it causes for the autistic person, but only what it causes for the families of the autistic person.

She goes on to say that this will not be the case anymore because the next day was the summit in Washington, D.C. to “demand a national response” (para. 8).  She goes back to the idea of “Think about the families of our nation” in the next paragraph.  “Don’t our families deserve it? America has always been about its great people” (para. 9).  What is interesting to point out here is that Wright is appealing to her audience’s sense of national pride.  “American children”, “Army, Navy, Air Force, and Marines…National Guard”, “as a nation we’ve done nothing” are all examples of her appeal to this national pride.

“Yet we seem to have forgotten our children – and our children are our future” (para. 10) is an example of her appeal to pathos.  It also is a very rhetorically savvy move because she uses second-person language here.  By using second-person language, she is able to get away with saying what she says.  If she said, “Yet you seem to have forgotten your children – and your children are your future,” that would have put the audience against her because it would feel like an attack.

Back to families again when she talks about how moms, dads, and care-takers barely sleep.  When they do sleep, it is with an ear waiting for their child to do something next like “escape, hurt themselves, strip off their clothes, climb the furniture, and raid the refrigerator” (para. 11).  She ends the paragraph with another representation of autism “Sometimes the silence is worse” (para. 11).  Autistic people are silent according to this article.

She continues with her story of the families by saying that families with children with autism “are not living” (para. 12).  It is wonderful to know that autism can make it so families are not living.  So, I wonder, are they zombies?

Nope, Wright continues that “they are existing. Breathing – yes. Eating – yes. Sleeping – maybe. Working – most definitely – 24/7” (para. 13).  Zombies don’t breathe or eat (unless you count brains).  As facetious as that comment may sound, the image that Wright weaves of autism is of a fate worse than becoming a zombie.  A fate where you are conscious and existing, but are not living life because of your autistic child.  

She then begins a series of bolded sections that read “This is autism” (para. 14, 16, 25) where she gives an example of something families have to live with when they have an autistic child and then says “This is autism.” The first example she gives is that “Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future” (para. 15).  It is at this moment that I must begin to ask myself, is this autism or is this the definition of being a human being.  Most human beings live moment-to-moment, anticipating their child’s next move because children are, well, children.  This means they will do stuff that no adult would ever do, but that is because they are children.  I have a hard time believing that every single family of an autistic child lives their life in a constant state of despair. And if they do, it is probably because of a mental health difficulty in the parents, for which they should recognize it is within themselves and not caused by their child’s autism. Most human beings are also afraid of the future because we don’t know what it holds.  So, is this autism?  No!  This is what it means to be a human being.

The next paragraph further explains what Wright means by “living” when she says, “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 the bad days, they are depleted. Mentally. Physically. And especially emotionally” (para 17).  Is this autism is is this just a little thing called life?  Are good days and bad days determined by autism or are they determined by the mental health of the parent?  The latter is my opinion and there is absolutely no shame in mental health difficulties!  But there is shame when the mental health of the parent is blamed on the autism in the child.

The next few paragraphs actually sort of have something to do with autism,

Maybe they [the parents] 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.

This is autism. (para. 18-21)

However, the first one is a comorbidity of autism, NOT autism itself.  Seizures can happen in autistic people, but they are a symptom of epilepsy, not autism.  Can the second or third paragraph happen to a child without autism?  Yes!  A child without autism may wet their bed until they are in the teens or beyond depending on things like how much they drank before going to bed or a traumatic experience they had.  Perhaps the third one doesn’t happen as specifically as biting themselves, but some teenagers without autism participate in self-injurious behaviors like cutting.  So, is this what autism is?  No!  Not every autistic child will have these behaviors and these behaviors are not only found in autism.

The last four have absolutely nothing to do with autism:

Maybe they [parents] 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. (para. 21-25)

This is not autism, this is all examples of how low socioeconomic status impacts families with autistic children.  However, Wright would argue with that by saying these families are at a low socioeconomic status because their children have autism based on her quote, “We’ve let families…go broke” (para. 7).  Now, we have the image, or identity, of autism being the following things according to this article

  • Autism causes families to split up
  • Autism causes families to go broke
  • Autism causes families to struggle through their days and years
  • Autism causes families to simply exist rather than live
  • Autism causes families to live in despair
  • Autism causes families to live in fear of the future
  • Autism causes families to be mentally, physically, and emotionally depleted because
    • Autism causes families to be up all night because their child had a seizure
    • Autism causes families have to change the sheets after a bedwetting accident
    • Autism causes families have to stop their child from biting them or themselves
  • Autism causes families to not be able to afford a trip to the autism specialist
  • Autism causes families to be on a waiting list for services
  • Autism causes families’ insurances to not pay
  • Autism causes families to not have enough money to pay for a lawyer to fight for school services.

Apparently, I do not know about autism because if I did, I would “know we are looking at a monumental health crisis” (para. 26).

Next, Wright finally brings it back to the autistic child.  “In the next ten years, 500-thousand Americans with autism will be growing up and out of the system which means they will no longer qualify for the services they rely on every day” (para. 27).  Services they rely on every day is a fascinating choice of words because it implies that the autistic person cannot make it without them.  And again, it is filled with absolutes, that if a child does not rely on services every day, then they are not autistic.  That means that even though I have a diagnosis, I am not autistic because I don’t rely on services every day.  

Before she changes her tactic, she goes right back to the parents and families of autistic people asking the following questions “And, what about their parents? How much can we ask them to handle? How long will it take before the exhaustion makes them ill? How long before they break?” (para. 28)  

“There is no national plan to build a city for 500-thousand people” (para. 30).  Remember that number?  That’s how many children with autism will be growing up in the next ten years.  In other words, the national plan could include building a city to hold the 500-thousand autistic people and that is perfectly fine!

She then goes back to an appeal to emotions and national pride in paragraph 31 when she says, “So let’s dial back a minute and consider the babies being diagnosed with autism every day in this great country.”  Then, she begins to get confusing because one of the claims that Autism Speaks and any person who works with autistic people makes is “Once you’ve met one person with autism, you’ve met one person with autism.”  In other words: Every autistic person is different.  The quote where she begins to get confusing is “Are they [autistic babies] getting the same medical care and therapies across the board?” (para. 31)  Apparently, every autistic person is different, but we must treat them all the same medically, even if they don’t respond the same ways.

“We know children from minority and lower income families are not getting diagnosed as early as they should be, so their treatment begins later which might decrease their chance of progress” (para. 32).  How is Wright defining progress?  Most often, progress is defined as being indistinguishable from their peers.  The Autistic Community calls this “Passing,” a term they borrow from the Queer Community.  But there is a cost to this “progress,” namely, anxiety and poor self-esteem.  This anxiety and self-esteem are caused by a constant feeling of “being on the edge of messing up and revealing your autism.”

Wright goes back to contradicting the main mentality of autism when she says, “Is there a national curriculum for our children” (para. 33).  

Then, she paints the most vivid image of what three million people with autism would like like

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. 40)

So, no autistic person is able to do the following:

  • Take care of themselves
  • Unable to dress themselves
  • Eat independently
  • Unable to use the toilet
  • Unable to cross the street
  • Unable to judge danger
  • Unable to judge temperature
  • Unable to pick up the phone
  • Unable to call for help

These are the images that Autism Speaks has been crafting around autism.  These are the same images that made me refrain from seeking a diagnosis for 8 years because I can do these things (Some may be difficult for me, but in the end, I can do them).  However, the language Wright uses is absolute, autism affects every autistic person in this way.

I want to focus just a little bit on her appeals to national pride.  Looking at the words country and nation reveals that she uses country 5 times and nation 11 times.  The way that she uses them implies that autism is not just a menace to parents, it is not just a menace to autistic people, it is also a menace to our nation.  Why else would we call in “the Army, Navy, Air Force and Marines” (para.  4)

To sum it up, this is the image of autism:

  • Autism affects families with autistic people in them by
    • Causing families to split up
    • Causing families to go broke
    • Causing families to struggle through their days and years
    • Causing families to simply exist rather than live
    • Causing families to live in despair
    • Causing families to live in fear of the future
    • Causing families to be mentally, physically, and emotionally depleted because
      • Causing families to be up all night because their child had a seizure
      • Causing families have to change the sheets after a bedwetting accident
      • Causing families have to stop their child from biting them or themselves
    • Causing families to not be able to afford a trip to the autism specialist
    • Causing families to be on a waiting list for services
    • Causing families’ insurances to not pay
    • Causing families to not have enough money to pay for a lawyer to fight for school services.
  • Autism affects autistic people by preventing them from
    • Taking care of themselves
    • Dressing themselves
    • Eating independently
    • Toilet the toilet
    • Crossing the street
    • Judging danger
    • Judging temperature
    • Picking up the phone
    • Calling for help

Autism Speaks has effective created a 21st century frankensteinian monster.  I say that because they are taking symptoms from the wide spectrum that is medical autism and applying them to this term.  In other words, even if only one autistic person is unable to call for help, that symptom has been added to what autism is.

Here, I must acknowledge that there are some autistic people who perhaps cannot take care of themselves or dress themselves, but the image that Wright created was that every single autistic child, all three million of them, are unable to do this.

She does this to ensure the public will agree with her final conclusion: “We need a national plan.”  We wouldn’t really need a national plan if, out of three million autistic people, only a few of them had some of these needs.  We would certainly try and help them, but we wouldn’t declare a public crisis, call in the military, or build a city for five hundred thousand autistic people.  In other words, the rhetorical move she is making is establishing the exigency of a national plan that will align itself with Autism Speaks’ mission of eradicating autism.

Autism Speaks thrives on (by making about $70 million every year) the image created in paragraph 40 and they’ve attempted to cement this into the public’s consciousness: autistic people cannot do anything, therefore, organizations like Autism Speaks must advocate for them.


John Elder Robison’s Response

On November 13, 2013, two days after the publication of Suzanne Wright’s article, John Elder Robison wrote a blog post responding to Wright’s article and announced his resignation from Autism Speaks.  While he was not the first person to speak out against Autism Speaks, perhaps he made the most impact.

In order to understand why it made the most impact, one must understand one of the Autistic Community’s biggest criticisms of Autism Speaks: Autism Speaks lacks autistic people in positions that decide on things.  This was not always the case because John Elder Robison is autistic.  He was the person that Autism Speaks could point to if anyone brought this argument up.  However, they could not do that anymore with his resignation.

He begins the article with an edited mini-reflection that he wrote two years after writing it.  He asks a great question, “But will the organization change in a meaningful way? Only time will tell” (para. 1).  One of the questions that I will attempt to answer in my thesis is a shift on this question: can Autism Speaks change in a meaningful way?

Autism Speaks is the self-described “World’s largest autism science and advocacy organization.”  Therefore, to go against Autism Speaks is to go against science, at least in part because the name Autism Speaks and autism science has become nearly synonymous.  Robison addresses this very early on when he says “I am a strong believer in science,” (para. 4).  He points out “there is a vast gulf between the tone of Mrs. Wright’s words and my own” (para. 4).

In the next paragraph, he says

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 the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way. (para. 5)

This is a vastly different representation and narrative of autism.  It is crafting an image of autism as a gift that holds disability, but it also holds gift as well.  Vastly different is the narrative and image that autism is only a disability that drives parents and society to despair.

He embraces the idea of autism as a spectrum and as a moving spectrum.  Where one day, I can be fine at socially interacting and the next, I can barely function during a social interaction.  “Some of us feel ‘totally disabled’ and others feel ‘totally gifted.’  Most of us – I’d venture to say – feel both ways, at different times, depending on what we’re doing at that particular moment” (para. 6).

Next, he says he supports both “changing society to make it more accommodating for people who are different…[and] developing therapies, treatments, and tools to relieve suffering and disability from both autism and the conditions that accompany it for some people” (para. 7).  This is opposite to Wright’s absolutist claim that everyone affected by autism – be they parents, society, neighbors, or autistic people – suffers.  

In the next paragraph, he gets a bit confusing.  Autism is a gift and a disability is what he has said so far in this article.  However, he then says,

If I act a bit different because I’m autistic, I think it’s my right to do so without being mocked, bullied, or discriminated against.  At the same time I realize people are people, and if I act like a jerk, I will be treated as one.  I understand I have a responsibility to learn how to behave in ways others will find acceptable or even appealing. (para. 8)

The wording of this implies that Robison associates autism with being a jerk.  Not only that, but difference is not okay because autistic people have a responsibility to act neurotypical.  It contradicts his idea of changing society to be more accommodating.  Why isn’t it society’s responsibility to learn how autistic people behave and be okay with it?  In other words, what role does society have in the narrative of the autistic?  Robison seems to be saying that autistic people must change, not society.  While I understand that this may be a reality, that society will not change, that does not make it right.  70 years ago, society didn’t want to change their views on segregation, but they eventually did.  Just because society doesn’t want to change doesn’t make it right.

Robison continues his opposition at Wright’s image of autism when he says, “there are many ways autistic people can choose to live their (our) lives and all are valid and deserving of respect” (para. 11).  Autistic people can choose to live their lives, not have their lives chosen for them by Autism Speaks and the parents that Autism Speaks advocate for.  

In the next paragraph, he begins to specifically address why he is leaving Autism Speaks.  Wright says things in her article that Robison could never say to people.  As she was the leader of the organization at the time she wrote it, he felt that he could no longer, in good conscience, be a part of Autism Speaks.

He then goes on to discuss why he worked for them in the first place.  He worked “very hard to defend Autism Speak after a series of public relations missteps; beginning with the I am Autism video” (para. 14).  A transcript of “I am Autism” can be found in the appendix of this proposal.  I will be discussing this video in a little bit, but for now, know that it is an offensive autism “awareness campaign” that says much of what Wright says in her article: autism bankrupts parents and ensures their marriages fail as well.

“We [autistic people] are not problems for our parents or society, or genes to be eliminated. We are people” (para. 15).  This is the point where Robison begins to explicitly challenge the image that Autism Speaks is crafting around autism.

He concedes that “we do have problems and we need help. Some of us need counseling or training, while others have significant medical challenges. We also need acceptance, and support” (para. 16), but goes on to challenge their practices:

Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful. We have delivered very little value to autistic people, for the many millions raised. (para. 16)

He goes on to point out and give voice to what most people don’t know, “Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target” (para. 20).

Finally, he drives the largest nail in the coffin of the whole post when he says, “Any group that hopes to be accepted in service to autistic people must make autistic people its #1 priority, with no exceptions.  The priority cannot be autism parents, or autism grandparents.  It’s got to be actual people with autism” (para. 21).  He explicitly points out who Autism Speaks really advocates and works for: the parents or grandparents of autistic children.

Robison, an autistic man who worked to change Autism Speaks from within, quit the organization and publicly posted his letter of resignation pointing out that Autism Speaks’ #1 priority is the parents or grandparents of autistic children, rather than autistic people.  This should have opened the doors wide open, but it didn’t.  Not many in mainstream society have heard about this.

My final thoughts on Robison post is that he challenges Autism Speaks’ narrative of the autistic person as useless and unable to care for themselves by 1) simply writing as an autistic person, and 2) logically taking Autism Speaks to task on their image of autism.  However, he maintains the same image of autism that Wright uses, but in different words: the image of autism as capital-“O” Other that needs to be fixed.  What is the difference between cure and fix?  

There is no difference between cure and fix.  You cannot separate a person’s identity from their autism (autism is the lens with which they see and interact with the world); therefore, if you cure autism, you cure the identity of the autistic person.  Fixing parts of autism that cause suffering vs. curing autism because it causes suffering are two ways of saying the exact same thing: autism needs to be fixed.  Put more strongly, autism needs to be eradicated.

Therefore, while he does a great job challenging the image Autism Speaks has created for autism, he also uses “the master’s tools” if you will (the language and idea of autism as needing of a fix).  But he is not alone in his efforts to challenge the image Autism Speaks creates.  But more on that later!  For now, I want to juxtapose these two articles.


Juxtapositional Rhetoric

A pattern emerges when looking at both of these articles.  They share the same core mentality of autism, but to differing degrees.  Wright looks at only the suffering and negatives of autism, while Robison contends that there are gifts of autism.  However, Robison maintains that parts of autism should be fixed.  He seems to be saying we should have a plan for how to fix the parts of autism that make people suffer, for instance: a national plan?

The core problem here is that they are both looking at the same object: the autism that was crafted by Autism Speaks.  Autism Speaks crafts this autism by influencing the representation and narrative surrounding autism thus creating the image of autism as capital-“O” Other.

Another thing that is very striking when you actually look at the two documents side-by-side is the choice that Wright makes by using very short paragraphs.  On average, her paragraphs are 20 words long.  There are only three instances where her paragraph is more than 55 words long:

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. (para. 11)

So let’s dial back a minute and consider the babies being diagnosed with autism every day in this great country. Do we have a plan for them? Are they all getting the same medical care and therapies across the board? Are we doing anything to guarantee they get a fair shot at a productive future? (para. 31)

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. 40)

What is the purpose of writing like this? It could certainly be argued that this is just her writing style, however, if you look at any transcript of her speaking, she is very eloquent and goes into depth to support what she says.  This is not on showcase in this document.  Again, why is this?  Rhetorically speaking, this is a masterful rhetorical move because it is (1) simple to read and (2) simplifies a complex situation to under 20 words in a paragraph.

Robison’s average 55 word paragraphs are sharply juxtaposed with Wright’s 20 word paragraphs.  In his paragraphs, he goes into depth to support what he says, thus leading to logical appeals of what Autism Speaks is doing.

Insert the most amazing and awe-inspiring transition here that will leave the audience in ecstasy-like (also known as ecstatic) awe


Awareness Campaigns? I think Not: Exigency of this Topic

Exigency

John Elder Robison discussed the video “I am Autism.”  It was a video that Autism Speaks published in 2010.  It was directed by Alfonso Cuarón.  This was developed as part of an autism awareness campaign.  Some of the things that they rose awareness about autism were the following:

  • Autism will make the parents’ marriage fail
  • Autism will bankrupt the parents
  • Autism is a stalker
  • Autism works faster than pediatric AIDS, cancer, and diabetes combined
    • Therefore, Autism is the same as AIDS, cancer, and diabetes

This is an awareness campaign of the image of autism that Autism Speaks has been cultivating for the last 10 years.  Autism is a burden and a monster.  But what about autistic people?  Are autistic people also burdens and monsters?  Well, Autism Speaks can’t go around claiming that because parents and society would realize what they are really doing.

We know that they seek to eradicate autism, but how do they do that when the autism is an inherent part of the autistic person’s identity?  Well, this is where their rhetoric is kicked up another notch.  They maintain person-first language (e.g., person with autism) in every one of their documents and correspondences.  This even includes correspondences with autistic people who ask to be called autistic people (Yergeau, clinically significant disturbance).

Person-first language is a linguistic and rhetorical attempt to show society that autism and the person are two separate things.  Therefore, when we eradicate autism, we don’t eradicate the person.  It is, as an analogy, no different than the Native American boarding schools’ whose goal was to “kill the Indian, save the person.”  But, in this case, it is more, “Kill the autism, save the person.”

But, autism is the neurological lens through which autistic people see and interact with the world.  You can no more separate an autistic from their autism as you could a person from their skin color (ASAN self-advocacy guide).  Not only that, but there is no organization out there that seeks to eradicate blackness by funding research into the genetic predispositions of and cure for blackness.  But this is what Autism Speaks is doing.  That is the exigency: lives and identities are at stake here.

Further Expansion

I plan on developing a theoretical framework in order to analyze the portrayal of autism using the rhetorical terms “representation, narrative, identity/image, and agency.”  I will apply them to several tool kits and awareness campaigns published by Autism Speaks and the Autistic Self-Advocacy Network (ASAN).  

Using these artifacts, I will also use Michel Foucault’s concepts of archaeology and genealogy to trace both of these organizations back to their ideological genesis using Bruno Latour’s concept of the Black Box and Kenneth Burke’s Terministic Screens.


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 (with an additional appendix).  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
    1. Input (blackbox) Output
      1. Different way of using language to empathize with the world (statistical normality) 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 normality) 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
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5 Weeks Remaining
4 Weeks Remaining
3 Weeks Remaining
2 Weeks Remaining
1 Week Remaining

 

Appendix

I am autism.

I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.

I know where you live.

And guess what? I live there too.

I hover around all of you.

I know no color barrier, no religion, no morality, no currency.

I speak your language fluently.

And with every voice I take away, I acquire yet another language.

I work very quickly.

I work faster than pediatric aids, cancer, and diabetes combined

And if you’re happily married, I will make sure that your marriage fails.

Your money will fall into my hands, and I will bankrupt you for my own self-gain.

I don’t sleep, so I make sure you don’t either.

I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.

You have no cure for me.

Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.

I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.

I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?

And the truth is, I am still winning, and you are scared. And you should be.

I am autism. You ignored me. That was a mistake.

And to autism I say:

I am a father, a mother, a grandparent, a brother, a sister.

We will spend every waking hour trying to weaken you.

We don’t need sleep because we will not rest until you do.

Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.

I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.

Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.

We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the Eurpoean Union. We are the United Nations.

We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.

We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.

Our capacity to love is greater than your capacity to overwhelm.

Autism is naïve. You are alone. We are a community of warriors. We have a voice.

You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.

You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?

You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.

Autism, if you are not scared, you should be.

When you came for my child, you forgot: you came for me.

Autism, are you listening?

 

I… Am… Autism… Speaks…

I am Autism Speaks…

I am invisible to your children. And I will be invisible to you until it’s too late.

I know where you live. And guess what? It’s no use hiding.

I have my eyes on all of you… I am watching you all.

I am Autism speaks.

I have no color… no religion… no morals… no love….

I speak the language of despair and disease. And with every voice I steal. I grow stronger.

I work quickly to make people believe your children are suffering worse than cancer or Aids victims.

I am Autism Speaks.

And if you’re happily married… I’ll distroy your marriage with unattainable dreams and broken promises.

Your money will fall into my hands… And I will bankrupt you… And pay myself hundreds of thousands of dollars a year.

I don’t sleep… And I’ll make sure you don’t either.

I will make it virtually impossible for you to leave your home without feeling the shame of diseased children.

I am Autism Speaks.

You have no defence against me…

Your advocates don’t have the money to fight me. And I relish your poverty.

I will make everyone think you and your children are diseased and disordered. And then… Turn on them.

I am Autism Speaks.

I have no interest in right or wrong.

I derive great pleasure out of your loneliness.

I will take away your hope.

I will rob you of your children and of your dreams.

I will make sure you will cry everyday.

You will wonder who will look after your children when you die.

And the Truth is… I… Do… Not… Care…

I am Autism Speaks.

And you are scared…

And you should be.

I am Autism Speaks.

You ignored me… A!!nd that was a Big mistake.

I am Autism Speaks…

And I speak in voices stolen from your children.

I am Autism Speaks.

 

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

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