Author: chughes

Carly Rose Hughes
Dis/Lit Final, Prompt #2
Dr. Chris Foss
April 30th 2019
Word Count: 1,200
The True Definition and Value of Autism: A Descriptor of Unique Traits
Prompt: (2) a thesis-driven argument relevant to disability studies that engages substantially with one or two of the theoretical pieces from the final unit.

Autism shows itself in different ways with varying levels of severity among the people who identify as having it. This is because autism encompasses a spectrum of traits, making it a sort of umbrella term for behavioral and social functions that society perceives as deviating from the “norm”. Because of this, people with and without autism alike can have differing experiences with autism, which can often lead to conflicting views and opinions of what an autism diagnosis means. This confusion about autism is made worse by the fact that Autism is hard to diagnose because of its lack of concrete , reliable characteristics. There is no agreed upon definition of autism even in a medical sense , causing many people, especially parents, to view autism as a disease that needs to be cured for a child to have a happy and successful life. This attitude is shown in Julia Rodas‘s Introduction and “Un-Conclusion” of ‘Autistic Disturbances’ ,with descriptions of PlayBoy model Jenny McCarthy’s parenting of her child with autism. Through analysis of her parenting choices combined with other autistic scholar’s view points, it is clear that it is not autism is not what needs to be cured for people with autism to be successful, but instead it is society’s view and treatment of people with autism that needs to be rethought. In this way, if Autism’s definition were societally re-framed away from its negative and nebulous medical connotations and instead viewed as a valuable personality trait which makes a person who has it who they are; harmful misunderstandings of autism would be eradicated and relationships between people with and without autism could be enhanced.

To fully understand society’s perpetuated misconceptions of Autism, it is imperative to have knowledge of the uncertainty of diagnosis which contributes to a general societal fear of a diagnosis. Autism is problematically associated with medicine in the way that people assume that since it is diagnosed, it must be a disease, and if it is a disease, it must be cured. However, “even at the beginning of the 21st Century, we don’t know what Autism is,” (Rodas/Murray). This is firstly because autism does not show up as a concrete, visual, or biological difference in any medical test. Instead, diagnosis is based on analysis of a person’s behavior. Author of Autistic Disturbances backs this up, saying: “..we have no way to measure it [Autism] but by its external manifestations,”. Knowing that diagnosis is closely tied to behavioral qualities, it is clear that Autism “…belongs to and is entwined with individual autistic identities”,(Rodas, Autistic Disturbances) meaning that there are many types of traits that can be associated with autism, and different types of people can have it. This reality is most likely because autism is part of a person’s individual identity, and is just a way to describe behaviors that can be seen as unique. As more people come to a doctor seeking an explanation for certain behaviors, more behaviors and actions become associated with a diagnosis of autism, contributing to further confusing nebulous-ness, which contributes to a higher amount of problematic fear of autism.

The description of Jenny McCarthy’s view of her son Evan’s autism diagnosis demonstrates this problematic fear of diagnosis, because her view directly ties fear of diagnosis to a fear of her son’s personality by subconsciously demonstrating how autism is a part of his identity. McCarthy says that her son was labeled autistic based on “…the boy’s play in the doctor’s office,”. (Rodas, Intro to Autistic Disturbances) This shows how tied to behavior diagnosis is, proving assertions from the last paragraph. Rodas continues : “When the doctor reveals to [McCarthy] that such behavior is characteristic of autism, McCarthy, her “heart shattered” observes “Everything I had thought was cute was a sign of autism,’”. This is obviously a reaction of grief in McCarthy, however, it is not based in reality. Her feelings imply that her son’s value does not exist anymore because his personality is one of what she perceives to be disease. In this way, she is grieving “…over the loss of the normal child [she] had hoped and expected to have.” (John Sinclair ‘Don’t Mourn for Us’) However, she had not thought that her son’s characteristics were bad or significant of sickness before the diagnoses, which drives home how flawed the associations that people without autism make are when it comes to a diagnosis of autism. Because Evan’s diagnoses was so clearly tied with his personality and his diagnoses was “heart shattering” to McCarthy, it seems that this mother it seems that to McCarthy, Evan’s autism is significant of Evan’s lack of personality, or at least lack of a valuable one. In this way, it is obvious that when addressing autism behavioral functions in lieu of a diagnoses, it is often times the parent’s conception of what autism is that needs to change so that a person with autism can receive the most fulfilling relationships with the people around them possible, and therefore the most fulfilling life possible. John Sinclair supports this by saying that “This grief over a fantasized normal child needs to be separated from the parent’s perceptions of the child they do have: the autistic child who…can form very meaningful relationships.. If given the opportunity,”.(Sinclair, Don’t Mourn for Us).

Since autism is a description of someone’s behaviors and personality, it is an unalienable part from who they are. An autistic person’s actions are natural to them, and are worthy of love and support, especially from their parents. The autistic part of their identity is essential to making them who they are. A quote that captures this idea can be found in the novel Troubleshooting by Selene dePackh, when main character with autism Dax/Scope describes her view of herself : “Autism is what I am…it’s not something I can beat any more than I can beat being small…”(dePackh, page 211). So just like a physical characteristic, autism is just another valuable aspect of a person’s identity. In this way, Evan McCarthy still had the same traits with and without the autism diagnosis: the autism diagnosis does not change who he is or what value he should have. He is still the same “cute” child his mother Jenney thought she had. All of this is directly supported by the main idea of John Sinclair’s piece “Don’t Mourn For Us”, saying :

“Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it 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.”

If society’s view of autism wasn’t viewed through a misconstrued medical lens; parents such as Jenny McCarthy would not be as affected by their child’s autism diagnosis. Parents would understand that it autism is not a trait they can free their child of, but a trait that deserves love and support through realization does it is part of who their child is.

Citations

dePackh, Selene. Troubleshooting: Glitch in the System: Book One EBook: Selene DePackh: Kindle Store. Reclamation Press, 2018
Don’t Mourn For Us, John Sinclair. Autism Network International Newsletter, Our Voice, Volume 1, Number 3, 1993. Referenced in 1993 International Autism Conference Speech. Accessed online at : [http://www.autreat.com/dont_mourn.html]
Julia Miele Rodas, “Introduction” and “UnConclusion—Because the Butterfly: Autistic Infinitudes” from Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe . Accessed on Class Website, Week 15 Readings.

I sat on the bench outside “Take Back the Night” and listened to the speakers tonight, April 16th 2019.  Natalie Illham was the featured speaker and an alumni of UMW! She has many honors for her poetry, and a disability advocate who experienced sexual abuse. She made the point that creative writing and communities that facilitate it help give survivors a powerful voice and outlet to create social change. This made me think of our project, where we all used our own creative licenses to make something to facilitate controversial thought about disabled experience and needs. Additionally, this event advocated for normalization of therapy because of the truth that trauma is a part of a person’s identity. This does not mean that a survivor or disabled person  has get better, or has to heal, but they should be given the resources to live the way they need to. This statement is a paraphrased idea that the keynote speaker presented, and I thought it was really important because it shows a sort of intersection or at least similarity between disability and traumatized persons such as sexual assault survivors–the piece of them that makes them deviate from society’s perceived “norm” does not make them less valuable or capable–they need not feel any shame or failure, they just must be provided resources and mechanisms to live according to their needs and experiences; embracing their identity, experiences, and abilities as valuable and strong.

Carly Rose Hughes; Major Paper/Project Submission
Chris Foss Dis/Lit 384
April 10th 2019
American society runs on a competitive system of power hierarchies, which are seen in race, gender, and abilities. This system depends on society’s “othering” of groups, or the ranking of their value in society by comparing them to the perceived “norm.” This norm—generally a white, heterosexual, able-bodied male—is not only often seen as the most powerful type of person, but the only type of normal person. Any type of person who deviates from this “norm” has their future and their social definition picked out for them. This idea is described in Kafer’s article, “Imagined Futures,” where an ableist society categorizes lesser goals and futures for the disabled author. This ableism is described in Jay Timothy Dolmage’s article, “Academic Ableism,” as a social assumption that able-bodied people are the norm and the most valuable types of people to society. In this way, ableism gives able-bodied people privilege and social benefits that can be compared to white privilege gained through systems of racism. This privilege is described in Robin DiAngelo’s article “What Fragility” as living “without race-based(i.e. oppression based)stress,”.(DiAngelo) Through the Civil Rights movement, black people started to prove their worth to white society, flipping this racist narrative of white dominance to one of black empowerment and value. It is clear that the motivations and effects of ableism and racism are similar, however, the disability movement has not made the same steps of unification or achieved the same general goals as the Civil Rights movement as of yet. However, through their similar experiences, it becomes clear that the Civil Rights movement can be a good model and symbol of hope for the newly-developing Disability Movement through emulation of its unifying first steps which create a more positive social representation of its oppressed group.
Dominant white, heterosexual, able-bodied Americans achieve and maintain their supremacy through oppression and “othering” of groups who deviate from the norm they define themselves as. In this way, biased, oppressive power hierarchies seen in race, gender, and disability are a necessity to the success of the “normal” group in America. For example, Robin DiAngelo, author of “White Fragility,” explains that dominant whites feel threatened by black groups self-advocating against oppression, because this type of discussion challenges the power structures that gave whites the power they hold and therefore their power itself. In fact, DiAngelo says that oppressed peoples are “the backdrop against which white society rises”(DiAngelo). This implies that white people have taken opportunities away from oppressed people such as blacks and given the opportunities to themselves, monopolizing success and profiting off of black people’s suffering. Since this is true, it is clear that if black people were viewed with and given the same respect, opportunities, and status as whites give themselves, then white supremacy would not be a reality because more blacks would be able to achieve success in America. In other words, there is no validity to the racist assumption that whites are more capable and deserving of success than blacks. Black people only live a disadvantaged life because of the disadvantages white supremacists impose on them through segregation, lack of funding of programs, and police brutality. In this way, race is a social construct; difference in value is created only by social assumption.
These racist assumptions and disadvantages impressed upon black people are similar to the effect of ableism upon disabled people, and thus can also be proven a false social construction. Jay Timothy Dolmage defines ableism in his piece titled “‘Academic Ableism” as an assumption that the able-bodied are more deserving of success because they are more capable than the disabled. This ableist bias is seen strongly in author Kafer’s experience as described in his piece, “Imagined Futures.” To society, disability means a life of “relentless pain, isolation, and bitterness”, all qualities that obviously categorize disabled life as lesser than able-bodied life (Kafer 2). However, these qualities are all created by purposefully created ableist disadvantages to the disabled that can be compared to the purposeful disadvantages set up against black people discussed at the end of the last paragraph. Examples of the same types of disadvantages to the disabled can be seen in the staircase described in Dolmage’s “Academic Ableism.” The staircase is both a symbol and a harsh physical reality of the tools used to keep disabled people out of academia, which in America is a key ingredient to success. Dolmage asserts: “Something like the steep stairs outside of a university lecture hall can be critiqued as a spatial and architectural feature that excludes; the stairs can also be understood as making a rhetorical argument or sending a message at the same time”(Dolmage). In this way, the stairs outside a lecture hall are physically inaccessible to disabled bodies, which makes their disadvantage abundantly and specifically clear. Not only are the disabled physically unable to enter the lecture hall, but the stairs and lack of wheelchair equipment and other accessible tools send the message that the university does not even want them to. Additionally, this specific staircase that Dolmage describes can metaphorically stand for the other ways that all types of disabilities are disadvantaged: lack of accessible equipment, lack of helpful accommodations, lack of differentiation in learning styles, and overabundance of expectations like deadlines, time availability, flexibility in types of environments to reduce triggers, etc. In other words, in the same way that racism through segregation, lack of government funding of resources, and police bias precludes blacks from achieving success, it can be seen that the disabled are kept from success not because of their inability, but because of their inability to attain success in a mainstream way that matches the dominant “norm” of society. In this way, it is clear that being disabled is not a tragedy, not an abnormality, but an expected happening in human life.These purposeful disadvantages which are based in factually incorrect assumptions exist then only because white and ableist supremacist oppressors profit from their oppression. The oppression monopolizes the opportunities for success all in favor of the oppressor, and is the only way they achieve their superior status. White Able-bodied control of minority groups is perpetuated by imposing negative identities upon the minorities.
However, the general success of the black Civil Rights movement in the 1960s in fighting these types of disadvantages can give the newly developing disability movement a model of the steps to take to start changing their experience of oppression and bias, because their struggles are so similar and so base level to America’s societal structure. Not only are the disabled and black American experiences similar in the way of the oppression they face, but because of this similar oppression, their movement’s needs are also similar. Both groups needed to forget their differences and unite under a common identity to change the way their group is perceived and represented by society. This idea is backed up by disability scholar Tobin Siebers, who says in their article “Disability in Theory”: “Different bodies require and create new modes of representations. What would it mean for disability studies to take this insight seriously? Could it change body theory..?”(Siebers)
The need for unity and organization can be seen clearly in the divisions and disagreements that exist in the disability movement, showing its new wave, developing status as a movement. Much like how the people of the Civil Rights movement disagreed on religious preferences such as Islam versus Christianity, or political approaches to their issues such as nonviolence versus violence in self defense (All seen in Malcolm X vs. MLK), there are also many divisions and differences in opinion found in the disability movement. For example, “The language surrounding autism, and disability more generally, is itself often a minefield full of argument and opinion. Many claim that the term ‘autistic person’ is demeaning, because it suggests that the individual concerned is somehow defined by their autism, and that this is prejudiced and problematic. For the majority who work in social or healthcare, and in education, the phrase ‘person with autism is preferred”(Murray, “Autism”)Not only are professionals such as the ones mentioned here divided on how to refer to disabled people, but disabled people are divided in how the view themselves: some want to identify in the value and uniqueness of their disability, some want to see themselves as no different from the norm. In some ways, both can be true, because disabled people are only not the “norm” because of how society has defined them. Additionally, it is widely known that there are many different types of disabilities, and not all disability scholars agree on what counts as a disability or even how different disabilities should be dealt with in society, such as transgender issues, mental health, and other sorts of “invisible” disabilities.
As a divided, first wave movement, the disability movement needs to focus on representing themselves under a common positive identity to achieve base line unity. This is supported by author Davis’ assertion in his article, “The End of Identity Politics and the Beginning of Dismodernism,” that “the political and academic movement around disability is at best a first-or second -wave enterprise”(Davis 2). This is because he says “the first wave of any struggle involves the establishment of the identity against the societal definitions that were formed largely by oppression…a pulling together of forces, an agreement to agree for political ends and group solidarity, along with the tacit approval of an agenda for the establishment of basic rights” (Davis 2). These quotes show that a successful movement needs to be unified within itself first, creating a base so that they can take further steps such as creating a well defined common goal. Unity is created by normalizing or “turn(ing) positive” a marginalized group’s identity, since what they all have in common is oppression (Davis 2). The idea that unity is the first step to a successful movement is exemplified in the marginally successful Civil Rights movement, making it a perfect example for the “first wave” disability movement to model off of.
Socially-oppressed black citizens followed these first step ideas found in Davis’ article at the beginning of their movement, making their steps of unity and reinforcement of a positive identity a perfect example for disability. James Baldwin and Malcolm X encouraged their followers to unify under their truthful common identity. The “truth” is that they are all oppressed, but the oppression is unfounded because they are valuable especially because they have overcome the oppression they are subjected to. This type of “identity politics”(Davis) can be seen in Civil Rights leaders James Baldwin and Malcolm X’s assertions that black is beautiful and powerful. To James Baldwin, promoting the feeling that “black is beautiful” means to “rejoice…. Respect… and to be present” (Baldwin) in the value of himself and his life as a black man. He calls for black society to love and appreciate themselves in this way, because this will reject their lower social definition of powerlessness that racist American society has given them by directly juxtaposing it. He demands that black people become “racially conscious”(Baldwin) of their own value and entitlement to fair treatment and status in American society in this way. Racial consciousness means to be aware of the truth—they are not lower in society because they deserve to be, but because they have been systematically oppressed into that position with the methods and tools discussed above. This racial consciousness is the defining point of unification in the Civil Rights movement. It promotes positive identity politics for all blacks no matter what their differences are, as Davis asserts a first wave movement should. In fact, Malcolm X advocates for blacks to forget dividing differences such as religion and class, because no matter what, all blacks are oppressed and should push for respect that a people as beautiful and powerful as they are deserve. This unification and uplifting of the black race was essential to the movement for civil/human rights, because, as Baldwin says, if black people demonstrate their racial consciousness by standing up for themselves in self defense and advocating for their worth, they will “…create, the consciousness of the others…” (whites) “and end the racial nightmare, and achieve our country, and change the history of the world”.(James Baldwin) The knowledge of worth and value that racial consciousness embodies also encompasses the truths previously discussed. Hierarchies in power based on deviation from the perceived “norm” are socially-constructed and have no validity. All in all, this analysis shows that the Civil Rights movement was strategic in its success by taking calculated steps to build throughout their movement, which is even now still progressing against racial bias.
Like the Civil Rights leaders, disability leaders and scholars need to focus on what makes them the same: The stigmas seen in Kafer’s “Imagined Futures,” the lack of respect, lack of feeling of safety, and lack of rights that they all experience, instead of focusing on differences in opinions and approaches that were discussed above. Because of these similarities, disabled activists, leaders, and scholars should focus on changing the negative stereotypes that society defines them by and promote the more positive truth: disability is beautiful, valuable, and worthy of respect in society. This is the truth, because as we saw with Dolmage’s staircase metaphor, if disabled people were given tools such as wheelchair equipment, medications, academic accommodations, and technology to help communicate, they would be able to reach the same success and power that able-bodied people have. By being unified under a common identity, disabled groups can then formulate a common goal. By choosing to act their positive truth through advocacy, confidence, and love of other disabled people, disabled groups could bring a sense of “ability consciousness” to society that parallels the idea of “racial consciousness.”
Being completely conscious of abilities, races, and power hierarchies in America means to know the truth that no group is more able, valuable, or more powerful than another—there is only the oppressed and the oppressor. Through the similarities in racial struggles that were addressed by the Civil Rights movement, it is plain to see that the disabled are wrongly oppressed for the sole purpose of keeping American society running on its system of competitive power that it always has. However, even today Civil Rights struggles and biases prevail specifically because America is so dependant on oppression. This shows that the disability struggle will also be long, but will be most successful with the first step of unity which will change their social perception and representation, just like racial consciousness and sensuality did for the Civil Rights Movement.

Word Count: 2434 words not including Citation page
CITATIONS

Kafer, Alison. “Imagined Futures.” Feminist, Queer, Crip , pp. 1–24.

Dolmage, Jay Timothy. “Introduction : The Approach.” Academic Ableism: Disability and Higher Education .
DiAngelo , Robin. “White Fragility .”

Murray , Stuart. “Autism .” Autism , Routledge , 2012

Baldwin, James, The Fire Next Time. Random House, 1991.

Siebers, Tobin. “Disability In Theory.” From Social Constructionism To the New Realism of The Body, pp. 173–181.

“Malcolm X Speaks .” Malcolm X Speaks , Merit Publishers and Betty Shabazz, 1965.

Lennard Davis, “The End of Identity Politics and the Beginning of Dismodernism: On Disability as an Unstable Category” from Bending over Backwards.

As per our in class/group discussions today, I thought I would post some of my simpler thoughts about Faulkner’s chosen writing style, which is definitely making all of us feel some type of way about the book;) Ironically, I wrote my notes in a stream of consciousness style, but for the sake of conciseness and clarity I will have edited a bit. :

Faulkner’s Stream of consciousness style is something I appreciate as an art form, because I think it does a good job of representing disability and mental illness. My third grade teacher taught me to “show but don’t tell” when writing, and I think that Faulkner’s style definitely does this with his characters’ emotions. For example, I find the lack of punctuation in Quentin’s section to make me feel stressed, rushed, and confused. When I say confused, I mean I feel like ideas are blurring in my head. In this way, Faulkner is showing me the way Quentin feels by imparting his emotions on to me, the reader.

Additionally, I very much appreciate how Fualkner stays with this style throughout the novel no matter what character is the “speaker.” I think this drives home a point that every character in the book is struggling with something. The fact that he starts with Benjy’s point of view, the most obviously disabled character, could imply that we as readers are suppoused to compare the other characters to Benjy. Should we/do we characterize all characters as disabled?

A main point of comparison for me so far in reading was in the italics: I thought of the italics as intrusive thoughts, interruptions to the first stream of consciousness. I think it would be interesting to do a further comparison of how these italics show up in each portion of the novel, and the emotions that each section imparts to us as readers. This style is very revealing of disability and its workings, and I think with further analysis it could show unexpected thought processes in the characters.

While I don’t necessarily enjoy reading this confusing style, I appreciate its uniqueness and layered meanings. How could this feeling in itself even connect to how we as a society could view disability? Something that may be hard to deal with, something that we may not enjoy, but something that is valuable, interesting, and meaningful.

When combining the theories found in Snyder’s “Cultural Location of Disability” and Kafer’s “Imagined Futures,” it becomes clear that able-bodied disability activists do not understand the social expectations people with disabilities are subjected to. The possible effects of such pressures are perfectly exemplified in Lahiri’s short story, “The Treatment of BiBi Haldar,” and the experience of author Kafer, which both show the “relationship”(Snyder)  between social pressures and actual disabled experiences and insist on an end in social bias against disability.

An example of able-bodied activists’ lack of understanding of the social pressures on the disabled is seen in Kafer’s example of “blindfold exercises”to simulate blind experiences.  (Kafer, 5) This exercise focuses on physical lack of sight, but fails to simulate anything about the social experience of the disability, thus not fully representing disabled bodies through not exemplifying any of the bias and social pressures they deal with throughout their life.

Societal pressures are a pivotal part of understanding disabled experiences, as Snyder asserts that there is a relationship between society’s belief of what disabled experiences are, and what people with disabilities actually experience on page 7. Without an understanding of this relationship, able-bodied people could never simulate a disabled experience in any simple exercise.

Society views disabilities as an obstacle to leading a normal life, and insists that they are destined for a less fulfilling future of “pain and isolation”(Kafer,1). Not only does this affect how society views the disabled, but this also affects disabled people’s views of themselves,  and therefore how they conduct themselves in life. Snyder compares this effect on the disabled to the obvious effect on “normal” people by saying, “If disabled people are subject to the internalization of dominant definitions and values of disability just like those who are nondisabled, then asking clients about their personal goals is not a pat solution…of intervention.”(Snyder, 8). This quote shows that a disabled person’s personal goals and true desires could be influenced and changed by these societal roles expected of them, because they have never seen themselves represented in another way.  

The fictional character BiBi is an example of such an affected disabled person. In her village’s opinion, the only good future a woman can have is to become a wife. Somehow, a person cannot be a woman and disabled in this society because her parents deem that her disability makes her “ineligible” for marriage. If she hopes to be a normal woman, she must hope for a cure. In this way, BiBi’s true desire is to be part of society and not locked away by her parents. However, she conflates true desire with the misconstrued desire  to be married, because her village tells her that is the only way to be cured, and therefore to be normal. Similarly, Kafer dreamed to be an academic of disability but was told that it was impossible because he was disabled and that he should focus only on curing his disability and not following his dreams. His dream, or his “goal,” was needing to be cured, just like BiBi; however, Kafer broke societal expectations, going on to become an educated academic.

The difference in BiBi and Kafer’s experiences fully shows that able-bodied disability activists do not understand what it is to be disabled, because the disabled’s true ailment is that society rejects them because of their physical differences. It is clear that disabled experience is built both on societal bias and the physical fact of their own abilities in this way, and for different people these characteristics have different outcomes. (Seen through BiBi and Kafer)  This is why Kafer asserts to “think of disability differently” through “asking questions” (page 18), because this will truly break society’s biased system of labeling and expectations.

WORD COUNT: 620.  PLEDGE: I have neither given nor received unauthorized help on this assignment

I finally got logged in! Hope I do this right