Disability Double-Standards

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Patronizing an adult is never acceptable, no matter what developmental difficulties the individual may face. Being patronized is one of the most frustrating, belittling experiences imaginable. A lot of what the Bard warned NT’s against was different ways NA’s are often patronized, ways that NT’s may not even be aware of. His basic message is to not generalize and to not change someone’s individuality.

At one point, he mentions, “Every autist is unique.” Here is where I have a problem with his argument. Clearly he has experienced a lot as an autistic person, and clearly he has some very strong views on what is or isn’t acceptable… but if every autistic person is unique, these rules he makes may not apply to everyone. Some autists may appreciate stories about an NT’s relationship with another autistic person, or may want to hear encouragement and congratulations for using an iPad to communicate.

Of course, I have no authority to base this on, being neurotypical without any autistic relations. But does the Bard, being NA, have more credentials than I do? He certainly can say what bothers him – indeed he is entitled to – but in his Goldilocks lecture, he critiques parents of autistic children who think he cannot empathize with them or give valuable advice because he can speak. And if every autistic person is so different that NT’s should never make comparisons, then how can he claim to make those comparisons either?

The Cure

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Of the assignments we had to view for this class, the youtube video was the story that impacted me the most. Unlike the two readings, the video detailed the entire journey Bianca’s father experienced as a parent of an autistic child, then demonstrates his resolve to do whatever it takes to give her the best life possible. I think this is the desire any parent has (or at least should have) for their child. This was the part of the assignment I did first, and it gave me hope for how much parents love their children and want the best for them.

Then I read Defining Curebie-ism, which definitely changed my view of what parents of autistic children and to what lengths they are willing to go to “help” their child. This was not made clear in any of the readings, but I wonder if the so-called curbies are generally parents of severely autistic children, the ones that cannot speak or interact in any way, and if the other end of the autistic spectrum correlates with the other end of parental response. Personally, I think it would be easier to view autism as a “demonic foe that must be defeated at all costs” if my child could not interact with me normally because of it. However, this is where the problem arises: not knowing where the disability ends and where the child begins. As the post later states, the parents will sometimes blame their child for their financial ruin or familial strain, and some will even go as far as fantasizing about killing their child. They are no longer concerned about curing a disease, but just want to be done with the problem in its entirety.

This entire problem emerges from a single misconception, that of the cure. But is there a way to change what the public understands about a cure to autism when they already have such a strong image of its possibility? I suppose just general education will get the message across – this is where disability studies comes in handy! And although it might be a slow and difficult process, I’m afraid that may be the only option to alleviate the mentality that autism is a problem that needs to be solved.

In-class activity

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Group 5: Abbey Herringshaw, Devon Davis, Roni Petroelje

 

Positioning ourselves

  1. Terministic screens:
    1. Science: ABA works, prevents us from considering other options
    2. Recovery: recovery is possible, gives us the idea that recovery is possible for all individuals/should be at least attempted
    3. Normalcy: filtering autistic people as abnormal
    4. Finding a good middle ground between two sides: changing society and giving people with autism the best preparation for the real world
    5. Broderick writes about the history/context of autism in the public eye – gave us an idea of how those ten controversies could have developed
    6. Authors:
      1. Chew & Raymaker: addressing general public, informing people of the controversies and where they came from
      2. Broderick: possibly a parent of an autistic child – focusing on cures for children, options for parents.
      3. Burke: linguist/philosopher, not specifically intending to talk about autism

Finding fictions

  1. “Fictions”:
    1. DSM: deficits from norm, operizationalizing terms as subjective
    2. Broderick: recovery, treatment, scientific study
    3. Chew & Raymaker: stereotypes, recovery, epidemic, advocates
    4. Rainman and savant skills, generalizing disabilities, laughable, satire

 

Theory informing practice: Autism Women’s Network

  1. Advocating acceptance more than the scientific diagnosis, aimed at a specific audience that is personally involved with autism, not at the general public. Specifically a women’s society – aimed at a group that is not as much of a focus usually. Not focused on disability, but on everyday issues the women face.  Choose not to define autism/disability, but make specific effort to address gender.
  2. “AWN is dedicated to building a community of autistic girls and women, their families, friends and supporters. A place where all can share their experiences amongst a diverse, inclusive supportive and positive environment.“
  3. Focus on stories and articles from women, can be written from any perspective.

Terministic screens and autism

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First, my introduction:

My name is Veronica Petroelje, aka Roni. I am a junior double majoring in anthropological archaeology and English, with a museum studies minor. I plan on going into educational program design in museums. I love history and reading and interacting with people, especially kids. This semester, I hope to figure out my future more definitely, find a balance between schoolwork and other commitments and my two jobs and relaxing (yikes), and learn a lot from my classes, most of which are in fields that are entirely foreign to me.

And now, in response to: Think about Broderick’s essay in the context of Burke. In what ways do her “watershed rhetorical moments” function as terministic screens?

The word “recover,” as stated by Broderick, can be used to imply a number of things. For Lovaas, the autistic children in his study were considered to have recovered once they had reached the standard IQ range and could perform successfully in a public school first grade class. Maurice’s definition is not succinctly stated, but she obviously did have a personal definition, which her child reached through the ABA treatment. For the founders and members of Autism Speaks, recovery is desirable for every person with autism, and necessitates a scientific procedure or treatment. With all these people influencing the public, it is no wonder that the capricious treatments and supposed recovery seem to be the only option to parents or family members of autists. Once the idea of a cure has been introduced, it is difficult to accept a life with autism, regardless of what is in the best interest of the autist.

Anther distinction was drawn by the those supporting a cure between so-called “scientific” procedures and those referred to as superstitious, pseudoscience, charlatanism, and so forth. It is never expressly clear, however, what qualifies a treatment as scientific. Who decides its scientific quality? On what is is determined? What’s more interesting, however, is the power that word holds. Describing a treatment with the word “scientific” couples it professional research, white lab coats, and results. There is no need, therefore, to worry about the treatment being ineffectual or harmful. Anything based on scientific study must be safe.

So parents are left with the hope that the word “recovery” incites and the reassurance that “scientific” treatments provide, and are consequently unable to recognize the option of no treatment, just acceptance.

In anticipation

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In response to: What questions do you have and/or hope to explore this semester?

I suppose I should start by saying that the only personal interaction I’ve had with autism was while counseling at bible day camp for several summers in high school. One of the boys there was autistic, and I did not know what specifically that meant, what differentiated autism from other disorders, or how to interact with him. I remember being surprised to learn he had autism – he looked like a normal kid. That was when I learned that autism has no physical characteristics, and also when I realized how little I knew about autism in general. Needless to say, I knew nothing about the cure debate, the medical disputes, the culture, or the controversies.

This class will be a prime opportunity for me to learn everything that I apparently don’t know and more. I want to learn specifically about the effect of autism on people who do not have it, but are just as closely involved – parents, siblings, caregivers. For some reason, their perspective interests me greatly. I look forward to reading about other perspectives as well – people with autism, medical researchers, campaign members with various viewpoints. Overall, this class will cover a lot of areas I’ve never thought about.