Disability and Literature
Expecting Normal: based off of Jim Sinclair’s Don’t Mourn For Us
The first thing that really caught my attention in the article Don’t Mourn For Us, was in the second paragraph. Author Jim Sinclair talks about how parents, when they find out their child has autism, mourn for the child who they had expected to have. When you are having a child, you expect them to be normal and when it turns out that they are not, you will likely have mixed emotions. People seem to expect that everyone is normal until they are seen otherwise. The thought that I kept coming back to while reading this article was the expectation of normal. What is the expectation of being normal? Who is to say that those who are seen as other than normal are not the normal ones. All of these readings about autism and disability seem to make the reader realize that the way they are IS their version of normal. We, as a society, seem to only believe there is one form of being normal and if you don’t meet this expectation then you are looked down on. I believe that this is a naive way of seeing things. People need to open their minds to the possibility that yes, people with autism are different in many ways, but they are still human and they still have emotions like everyone else; they just show theirs differently. So I ask once more, what is the expectation of normal and why can someone who is autistic not be considered their own normal?
Expectations can be dangerous and yet it is a part of us. When we expect things to go one way and then they do not, it can crush you. The thing with expectations is that you have to allow yourself some space just in case things do not go as planned. Jim Sinclear describes giving birth to a child with autism when not expecting it as similar to having a stillbirth. You expect so much from this child, this baby, even before it is born and when you realize that these expectations are not possible, it can and will lead you to mourn the child that you did not have. Most parents expect high things of their soon to be child and when an autistic child is born instead of the child they were expecting, they might believe that this child can no longer exceed any expectations. The truth is that this is not at all true. Yes, your child may not be able to achieve those exact expectations, but that is more in your mindset than on their being autistic. The best thing to do would be to adjust your expectations to be more in tune to their way of doing things. Just because the expectations that they can achieve are different from the ones you had hoped for does not mean that they are any less than you. They are just more unique. Along with expectations, often comes the word normal.
What is normal and why do so many people spend their whole life trying to be it. What I have learned about the autistic community is exactly that, they are a community. They seem to know they are different from the rest of society in ways but that is their normal. We as humans often learn to think of life and everything in it as only having two sides. There are normal people who speak our language, think the same, see life the same way as us, that will have the same experiences as us. Then there are people who are not normal, who can not speak like us, think the same way, see life like we do, and who have different experiences from us. These “abnormal” people, we as society often think less of or pity. To them though, to those who are different and not seen as normal, this is their reality, their normal. They have their own way of speaking, of thinking, of seeing and experiencing life. These are all things that you can only understand if you are a part of them or if you try your best to understand and keep an open mind. It is not their fault that society can only seem to see it’s own reality instead of trying to see everyone’s reality.
When you put these two things together, expectation and being normal, you really just come to an unreasonable and unreachable idea of always expecting the normal. Of course there are also times when you expect better than normal. After you break down the meaning or meanings of normal do you realize that it is not fair to always expect your version of it from someone? It is ok to be excited and hopeful and expecting of a child that will soon be yours, but it is important to know that if this is not the case, if the child is not what you expected, that if they are autistic, it is not their fault and you need to learn to let go of the child you had expected. Once you have learned to let go, then start trying to learn and understand your autistic child’s version of normal.
In the end of the article Jim Sinclear has left a plea to parents of autistic children. This plea asks that you recognize the child that you have as an alien trying to navigate a new world. Not as the child that you lost because, this child never was. The child that you have needs you to do your best to understand and help them through in this world where they are different. Move forward with the child you have and stop moving backwards trying to find the child there never was going to be.
The conclusion that I have come to after reading and analyzing this article is that he wants people to see and hopefully understand the way he sees it. Autism is not something you should mourn over. What you should mourn over is what happens when someone who is autistic goes out into society and how they are treated, when treated as abnormal. But if you do mourn over this then do not just mourn, go out there and help. Change how they are seen and treated. Show society that their close-minded way of thinking is not the only way of thinking, and not the correct way.
word count: 1064
“DONT MOURN FOR US.” Dont Mourn For Us, www.autreat.com/dont_mourn.html.
Dr. Christopher Foss
Word count: 1,001
Final paper: Prompt 2
While some may have more access to resources around them that prevent race and disability from hindering their ability to thrive in life, race plays an essential part on how those with disabilities, including autism, are treated because they oftentimes feel ostracized from their community; even their own family. It is hard for those with a disability to feel as though they are supported if there are no resources around them, and it can be difficult for them to fully know themselves if they are not able to be educated and supported on such a matter.
In E. Ashkenazy’s theoretical piece Foreword: On Autism and Race, she talks about how life may be harder for those who have a disability and a person of color, citing some stories coming from those who have had firsthand experience with these hardships. There is no argument when it comes to race and identity, they practically go hand in hand. Your race could potentially make or break how challenging your life, or not challenging it is for that matter. Ashkenazy talks on personal experiences with her life as multiracial. “One of my favorite aspects of being multiracial is my ability to easily blend into the various cultures I’ve encountered. In my travels around the world, for example, I have often been pleasantly mistaken as a native and it’s a lovely feeling of acceptance and belonging. In Israel, I was Israeli. In Palestine, I was Palestinian. In Italy, I was Italian. And in Mexico, I was Mexican.” (Ashkenazy ⅹⅹⅳ). She talks about her wonderful experiences around the world that since she is multiracial (White, Japanese, Mongolian, Black, Cherokee, Indonesian) she was accepted in the best way possible by the natives wherever she traveled. She also talked about her experience with microaggressions, which defined are brief and commonplace daily verbal, behavioral, or environmental indignities, whether intentional or unintentional, that communicate hostile, derogatory, or negative racial slights and insults toward people of color. Although no harm was meant towards her, she had experienced microaggressions from her closest friends and family. Microaggressions are a common experience for people of color, even today.
Ahkenazy’s experiences with racism shine light on the fact that many are still uneducated on what is appropriate and what is inappropriate, especially towards those with disabilities. She goes on to mention that she has spoken with many people that had disabilities and those who are caregivers who have experienced blatant racism within their community and family. One in particular that she mentioned about a young Chinese girl who is on the autism spectrum, “She explained that in her culture, disability of any kind can bring shame on a family and is often a taboo topic. Her parents have been unable to accept her. In turn, this young woman has trouble accepting herself. She grew up walking on eggshells and was often heavily punished for not being socially aware of cultural customs, and for not performing at top levels in school.” (Ashkenazy, ⅹⅹⅹⅵ). Because this young woman’s family never truly accepted her for who she was, she had a hard time accepting who she was herself. She goes onto explain that when she discovered there was a group of people at her university that was specifically for people on the autism spectrum, and she was able to find comfort in that. This personal account goes to show that without a strong sense of understanding from the family and community of those with disabilities, their life is full of difficulty and challenges; both intrinsic and extrinsic.
In Morénike Giwa Onaiwu’s theoretical piece, Preface: Autistics of Color: We Matter., she talks about the experiences she faced herself as a person of color who also is on the autism spectrum. She speaks about one specific instance where she is arguing with her cousin who is biracial. “… Her concerns were legitimate, as she was never considered “black enough” or “white enough” for some people who unfairly wanted to make her “choose” one over the other. But her assumption that I was “luckier” than she because I looked “black” and she didn’t couldn’t be more wrong. My experiences were different than hers, but they weren’t easier. In some ways they might have been more difficult.” (Onaiwu Giwa ⅹⅲ). Onaiwu Giwa goes on to explain that her life as a young, disabled, black girl whose family is from Nigeria and has a South African background, was made up of not being able to feel as though she fit in anywhere because of her so called white mannerisms and differing fashion choices than those of the same race as her. Because she ate different food, dressed in different clothes and listened to different music than her black peers, she was not to be included with them; which in turn made her feel out of place for most of her young life. The way that society has shaped the view of what is ‘supposed’ to look autistic, or black, or any part of one’s identity has prevented Onaiwu Giwa and those like her to feel excluded from society; “I wasn’t considered “black” enough for my black American peers; despite our similarities in physical appearance…” (Onaiwu Giwa ⅹⅳ).
Ashkenazy and Onaiwu Giwa’s personal experiences and accounts from others highlight the importance of available support and resources to young persons of color that also have a disability. Without that net of support, there is a plethora of children that grow up feeling as though they have no community that they belong to, no safe haven that they can turn to in times of need. It is especially important for those families with children who are disabled to provide the utmost, supportive care they can to ensure that the child is met with the same opportunities that everyone else it met with. Race does play a role in how those with disabilities are treated because they are treated differently than their white peers, which is a point that Ashkenazy made in her piece and rings very true; and until something changes, it always will.
Kourti, Marianthi, et al. “All the Weight of Our Dreams: on Living Racialised Autism.” Disability & Society, vol. 33, no. 7, 2018, pp. 1175–1177., doi:10.1080/09687599.2018.1471811.
I pledge I did not receive help on this assignment: Kellie Bowman
Gina-Marie An & Rosemary Pauley
April 30, 2020
Autism and Identity: The Cure is Repressive
Throughout our Autism unit, we have discussed the ways in which autism has been devalued. Specifically, we have read instances of how medicine and medical research impacts the quality of life of an autistic person. Part 1 of Stuart Murray’s Autism begins with a contrast between stress on medical research versus improved education and which of the two is more beneficial for the autistic community. Murray suggests that “An improvement in the quality of people’s lives will come more quickly not with high level medical science, but rather with improved education or with increased public spending on disability programs…” (Murray, 9-10). He suggests that through an emphasis on medical solutions and a cure, autistic characteristics begin to be viewed through an ableist society as a negative characteristic that needs to be changed (Murray, 10). This reinforces ableist stereotypes that autism is problematic, undesirable, and in need of change and even full erasure. Through this reinforcement, autistic persons are stripped of their identities and they are isolated in their experiences with their disability. Erasure of the disability acts as an erasure of a part of their identity, which is associated with pity and negativity and makes the value of what is so key to their personhood worthless to society.
Medical emphasis on a cure is just another way of creating a social divide between neurotypical people and autistic people. They are cast out and ostracized because they don’t fit the definition of what our ableist society sees as conventional. For many researchers working towards a cure, curing is meant to take away autistic traits and get as close to neurotypical as possible. This notion of essentially taking away a key part of an autistic person’s identity devalues their personhood and separates them further from neurotypical people. Murray sums up this problem in pushing for a cure in saying that “the word ‘cure’ is a threat, a barely disguised attempt to define difference as something inherently negative and unwanted” (Murray, 90). Curing autism insinuates that autistic people are inferior to nondisabled people, and by that standard, they should be fixed to better fit into ableist society. A cure would be selling the lie that getting rid of autism is better for those who have it when really it would be beneficial for neurotypical people who do not understand the disability to make an effort in better understanding autism and disability itself. This push for the cure can be misleading and it doesn’t target improvement for the life and environment of autistic persons, it is targeted towards erasing the disability for the benefit of nondisabled people.
Lack of consideration for actual autistic experience further stretches the divide between abled and disabled. Personal freedom and independence are lost at the cost of misguided stereotypes on the autistic community. Autistic persons are deemed as unpredictable, even dangerous, and are not given equal opportunities to be independent individuals in society. For example, in Braddock and Parish’s An Institutional History of Disability, they discuss the ways in which history has revealed wrongful treatment of disabled persons in the medical realm. The medical world is described as impersonal and sterile; case studies and primary texts ignore the personal experiences of autistic people. As political activism came to a rise with the availability of more service programs, autistic lives are further socialized and infantilized through ableist social construction. These constructions ultimately try to decide what autism is and what the label of autism means for autistic people themselves. Braddock and Parish discuss this categorization and construction, saying, “The process of categorizing persons with disabilities into the minutiae of their impairments resulted in the development of specialized treatments and residential and educational services, but also established and reinforced notions of the boundaries between normalcy and aberrance in Western society” (Braddock and Parish, 13). The autistic label is not a label that others outside of the disability deserve to construct and define for their own benefit. It is even more offensive that they push these ideas onto autistic persons themselves and tell them who they are, without listening to autistic voices and wants. Abled persons who want to have ownership of this word are minimizing autistic people’s personal ability to have choice and demeaning them to be insufficient enough to be self-determinant. Creating more restrictions for the autistic community is only silencing their voices and limiting their opportunities for personal growth. Autistic persons are a part of this world as equally as any other person and deserve to create and dictate their own narratives and experiences.
Murray describes autism as being “built into the fabric of the person who has it… it is not an illness” (Murray, 90). Ableist standards expect people with autism to want to break away from their disability and strive for a neurotypical life as a default, not taking into account how valuable their disability actually is. Autism is such a prevalent and essential piece of who they are that attempting to take away their disability is like taking away their identity. Erasing part of someone’s existence because it doesn’t match the ableist viewpoints of our society is dehumanizing and insulting to autistic people and punishes them for not aligning with nondisabled experiences.
Ableist views dictate that autism is the problem rather than admitting that the way our society treats autistic people is unacceptable, and extend this lack of respect further by pushing for a cure that erases autism altogether. It is important to recognize how this might impact autistic lives. We should strive for more representation of their everyday experiences as well as their experiences with a society that stereotypes what autistic persons are capable of. This type of prejudice continues to limit autistic experience and growth; it is dehumanizing and covertly assumes the notion that having a disability is a negative characteristic that needs to be mended. Abled people have to recognize that their disability is a major part of who they are as a person and trying to fully erase that part of their identity is insensitive. Looking inward towards ableist society and perspective can mend this awful misrepresentation of the autistic community and close the gap between neurotypical people and autistic people.
Word count: 1029
I pledge. Rosemary Pauley and Gina-Marie An
Braddock, David, and Susan Parish. “An Institutional History of Disability.” Disability at the Dawn of the 21st Century and the State of the States, 2002, pp. 11–68.
Murray, Stuart. Autism. Routledge, 2012.
Disability & Literature
April 30, 2020
Prompt Three: Utopia Redefined in Rebecca Foust’s, “Apologies to my OBGYN”
Disability, as discussed in Rosemarie Garland Thomson’s paper, “The Case for Conserving Disability,” is threatened by religious teachings, the science and medical field as well as general ableist perspectives. This danger appears through the promotion and possible progression of a eugenics movement that agrees with the research and potential removal towards disabilities that could be ‘eradicated’ from existence entirely. The piece connects with Rebecca Foust’s, “Apologies to my OBGYN,” as the speaker tells the story of cruel behavior endured by a discriminatory doctor and staff. People in positions of power may feel their actions are justified because of their outlook on Autism, and the ways in which they believe that child may or may not end up living their lives. The speaker suggests a redefined utopia exists with the presence of disability in our world; A utopia that appreciates and celebrates difference rather than rejects the notion entirely for a “normal” world.
The speaker’s emphasis of apology chooses to acknowledge their doctor’s belief that the child they have birthed is a burden to the medical staff. The repetition is orchestrated in a manner that allows the practices’ ableist mindset of the child being a “burden” or “failure” to make the reader sick to their stomach. The frustrated and Truth unraveling voice of the speaker in “Apologies to my OBGYN” belongs to Rebecca Foust, as disclosed in an early 2015 reading of her poetry. She calls it a specieses of rant and curse poem, in which she addresses negligent behaviour of her male doctor towards herself and her child, as well as the treatment of male doctors towards female patients. It is important to consider that women find it necessary to apologize in situations that do not need to be forgiven, because they are expected to humble and redeem themselves from “being in the wrong” when they were not in the wrong to begin with. Expanding on the nature of her apology, Foust’s son was belittled and stigmatized because of his “difficulty” being premature and Autistic, which inspired the writing of her profound poem. She makes sure to focus on the irony of the anaphora used through repetition of the word “Sorry” in nearly every stanza. “Sorry that my boy birthed himself too early / Sorry we were such pains in your ass / Sorry about how he defied your prognoses / sorry he took so much of your time …” The sarcasm of this apology sheds light on what couldn’t be predicted, and shouldn’t be blamed for, but was made to feel like a source of shame because of her doctor’s view of an Autistic child.
The idea of preserving, rather than opening a door for eugenics and eliminating disabilities such as Autism all together is threatening to doctors like the one that has been mentioned by the speaker. The lines that follow the speaker’s apology include, “Took up so much room in your prenatal nursery / that he did everything backwards / skyrocketed premiums, weighted the costs.” This general kind of doctor to patient attitude is the same kind in Thomson’s piece that speaks for genetic manipulation and selective abortion to get the mother of a disabled child to not take up so much space or become an expense rather than a newborn deserving of the same care as every child that is birthed in their care. As mentioned in “The Case for Conserving Disability” on page 340, when a child with a disability or presumed disability enters this world, they can be seen as a “catastrophe or a failing.” This coincides with the view of the doctor’s treatment towards the speaker and their child. Because they are already seen as a weight in our society, and a failure by the doctor, they come to recognize that they have been abused by the system.” The male doctor has a preconceived idea of how his authoritarian behavior, that is based off of a belief that an Autistic child is not “normal” by medical standards, is benefiting this child and his mother. He is cold rather than welcoming, discouraging rather than supportive. Instead of progressing our species towards a utopia, he is enabling a dystopia that is built on the foundation of ableist ideals.
The original concept of utopia operates under the idea that everybody is equal, and all live in harmony, yet exclusion of Autism and disability in general completely rejects this notion. The final stanzas of Foust’s poem reveal that the existence of her Autistic child in this world has not and will never be a burden. Instead, his differences contribute to the overall message of a redefined utopianism that is brought to life by the speaker when they state, “He spent / today saving hopeless-case nymph moths trapped in the porchlight, one matrix-dot / at a time, and now he’s asleep; blue wingbeat pulse fluttering his left temple; there, / there again. Just like it did then.” His life was always enough, his existence was enough. The hospital staff treated an Autistic individual like a hopeless specimen, destined for failure just like one might treat the moths moving towards porchlight. The Truth that should have been acknowledged is this: We cannot experience a bright and progressive future for humankind if we are not inclusive of disability, and the differences that our species should accept instead of eradicate overtime. Much like what is mentioned in August’s and Ronan’s story on page 351 of “The Case for Conserving Disability,” human relationships give us, “the opportunity to profoundly love another human being.” This was never considered or cared about by the male doctor or hospital staff addressed in Foust’s poem. The utopia we should envision is one that seeks harmony and equal opportunity of people, no matter what their differences may be.
Rosemarie Garland Thomson’s paper, “The Case for Conserving Disability,” introduces an ableist idea of what utopia could be if disability was eradicated entirely. However, Rebecca Foust’s, “Apologies to my OBGYN” ultimately offers a redefined version of what a “perfect” world should be, as it’s ending rejects the negative treatment towards the speaker when her Autistic child was born into this world. The idea of a utopia that is “inclusive,” yet rejects the differences of human beings, needs to be seen as dystopian and prejudiced. The hospital staff in Foust’s poem needed to appreciate differences, rather than despise them, and value the existence of an Autistic child as enough.
Word Count: 1061
I Pledge: Alyssa Brown
Foust, R. (2018, January 09). Poems. Retrieved April 30, 2020, from http://rebeccafoust.com/poems/
Garland-Thomson, Rosemarie. (2012). The Case for Conserving Disability. Journal of bioethical inquiry. 9. 339-55. 10.1007/s11673-012-9380-0.
Rebecca Foust. “Anaphora second person in “Apologies to my OBGYN” by Rebecca Foust” Youtube, 27 Mar. 2015, https://www.youtube.com/watch?v=pk_zgz0szXI
Word Count: 1126
I pledge. –Emily Saunders
Rhetoricity: The Voice of Autism
Consider this: human beings have a fascination with language, with communication, and use it in every action that they take. Words are prescribed to objects, people, abstract concepts, animals, relationships, et cetera, and they are used to convey endless messages across endless modes of communication. There are very few (if any) ways in which human beings do not exist and communicate at the same time. In particular, voice (both literal and metaphorical) is often taken for granted as essential to the human experience, but what happens when that voice doesn’t conform to the standards set forth by the masses? What if your communication looks different? What if your language doesn’t match the one prescribed to you? Autism is frequently treated and discussed in ways that disregard the personhood, and therefore voice, of people with autism, despite their rich, albeit different, experiences with language.
A close look at Melanie Yergeau’s Introduction to her book, Authoring Autism, and Ralph James Savarese’s essay “Toward Postcolonial Neurology: Autism, Tito Mukhopadhyay, and a New Geo-poetics of the Body” shows an intense focus on the ways in which language and autism interact. Though they take two differing approaches to the subject—Savarese focusing primarily on the experiences and words of Tito Mukhopadhyay, and Yergeau focusing on (non)rhetoricity—both works critically engage with the topic, arguing against common conceptions and prejudices.
Yergeau spends much of her introduction discussing her idea of rhetoricity—what it is, how it’s used, and the politics of being able to participate in it. She writes, “It is not uncommon. . . for rhetoricians to claim that rhetoric is what makes one human. . . [its] precondition for humanness or personhood is typically and deeply connected to how we conceive sociality, or our modes of relating and relatedness with our (neurotypically human) surrounds” (Authoring Autism 6). By this, she means that rhetoric—or the meaning-making system by which we as social animals live—governs both our society as well as how we as individuals relate to it. This is a pretty straightforward concept but becomes twisted when brought into atypical contexts. Consider how, for example, characters representing a minority are portrayed on television. Black men are the funny guy, the athlete, the criminal, and generally angry. Black women are “crazy”, hypersexual, matriarchs, and welfare queens. Members of the LGBT community are flamboyant, dramatic, caricatures, and often victims of violence. The disabled . . . well, the disabled are hardly visible to begin with. All of these tropes are rhetorical tools used to define and confine minority groups in order for the majority (straight, cis-gendered white folk) to maintain power and control.
In the case of disability studies—and more specifically autism—this can be not only degrading but dehumanizing, which Yergeau goes on to explore in her introduction as well. People with autism are often framed as being nonrhetorical (Authoring Autism 5). But, if rhetoric is what makes us human, as we discussed earlier, then what does that mean for the autistic? Do they not compose stories, interact with the rhetoric-laden world around them, and communicate? Scholarly literature would have you believe, as Yergeau points out, that “In all things discursive, autism represents decided lack” (Authoring Autism 7). The disability, according to this literature, inhibits the autistic from being able to meaningfully interact with and produce rhetoric, despite copious evidence of the opposite. The difference is, well, difference. Autistic rhetoric may look, sound, and/or feel different than that produced and consumed by neurotypical folk. However, this preconceived idea that rhetoric—and therefore humanity—must mimic one specific kind is what keeps autistic rhetoric from being integrated into modern literature and scholarship. There’s no effort to include and explore the rhetoricity of the autistic, and that is what ultimately keeps them from being able to establish their own voice.
What, then, does autistic rhetoric look like? How exactly does an autistic person produce and consume it? Ralph James Savarese takes an interesting stance on the subject, entering the conversation through discussion of “severely” autistic author Tito Mukhopadhyay (Savarese 5). Savarese is quick to point out Mukhopadhyay’s use of language and how it starkly undermines the current conception of people with autism as being nonrhetorical, including a staggering number of quotes from the young author’s works. Mukhopadhyay writes, at only eight years old, “One day I dream that we can grow in a matured society where nobody would be ‘normal or abnormal’ but just human beings, accepting any other human being—ready to grow together” (The Mind Tree 90). By including this particular quote, as well as emphasizing the age at which Mukhopadhyay wrote it, Savarese effectively challenges the idea of nonrhetorical people with autism. The young author clearly has a voice, has rhetoric to be shared, has a way of consuming rhetoric and translating it into something he understands, and that is an important thing to notice.
On top of the words themselves, Savarese takes time to discuss the physicality of Mukhopadhyay’s language, and how the difference in the author’s proprioception (“a sensory modality that can be defined as an awareness of one’s body in space” ) informs his rhetoric. The purposeful manipulation of voice in his book, The Mind Tree, sometimes in first person and sometimes in the third, speaks to the disconnect felt by the author between his personhood and his body (Savarese 10). Throughout the essay, Savarese’s purpose is to highlight and underscore the unique and rich way in which Mukhopadhyay uses his voice in his book. Of course, the young author is but one person, and one voice among many that deserve to be heard.
The important thing to remember is that rhetoric—language, relations, consumption, production—is not limited to one kind of format. Similar to how different languages express similar idea, or how there are different genres of writing, of poetry, of music and media, the language of autism isn’t somehow less than that of a person without it. It’s just different. Yergeau and Savarese both attempt to point this out in their own ways throughout their works, as have many other scholars as the disability studies scholarship expands over time. One tackled the concept of rhetoricity head on, emphasizing its importance and the significance of excluding an entire group of people from it. The other delves into the specific language of one autistic author in particular, exploring the difference in special relation to that of a neurotypical person and challenging the conception that people with autism—especially those who are nonverbal—are somehow incapable of meaningfully relating to and producing language. Both of them work together and individually to break down the harmful stereotypes and de-humanization of people with autism in order to allow them to establish their own voice in its stead.
Mukhopadhyay, Tito. The Mind Tree. New York: Arcade, 2003.
Savarese, Ralph James. “Toward a Postcolonial Neurology: Autism, Tito Mukhopadhyay, and a New Geo-poetics of the Body.” 2010.
Yergeau, Melanie. “Introduction: Involution.” Authoring Autism, Duke University Press, 2017, pp. 1–34.
April 29, 2020
Final Exam Prompt 1: The Toxicity in Not Abandoning Expectations
As I was reading Jim Sinclair’s “Don’t Mourn for Us,” I couldn’t help but wonder why there is so much grief and mourning happening in families after the diagnosis of a child with autism, and I realized the grief stems from the expectations parents have of their autistic child that they cannot ever possibly meet. Sinclair addressed this article primarily to his parents as a declaration of his own experience, and the blunt tone and vulnerability exhibited in debunking the myths and improper attitudes that parents often have towards their autistic children is powerful. In this essay, I will use Sinclair’s article to explore how families are in fact not grieving their child’s disability, but they are grieving the loss of the dream of a “normal” child that they can no longer have. Sinclair’s article is divided into three sections, with three separate myths that he debunks throughout. These three myths are that autism is not an appendage, autism is not an impenetrable wall, and autism is not death. I want to place emphasis on the first two sections.
Sinclair invites readers to “look at our autism, and look at your grief, from our perspective,” that being the perspective of a person with autism. There is already a certain amount of grief associated with the diagnosis of any child’s disability, but unfortunately more often than not with parents of children with autism, it stems from the loss of the idealized child they have fantasized about. That being the continued source of grief causes damage and hinders the development of an authentic relationship between a parent and their child (Sinclair). Treating an autistic child like a burden to their family only reinforces negative and discriminatory stereotypes of disabled children not being equal to or as desirable as able-bodied children and is nothing but harmful. It is the punishment of a child for something that they have never, and will never, have control of.
Beginning in the first section, Sinclair expresses that autism is not something that a person has, or a “shell” that a person is trapped inside (Sinclair). It is unfair to look at a child with autism and assume that their autism is just a layer of their personal identity that can be removed and disposed of and mourning the diagnosis of a child’s autism is a parent simply mourning their child’s entire being. Sinclair expresses, from his perspective, that when an autistic child hears that their parent wishes they did not have autism, they hear that their parent wishes they do not exist and that is a valid point to be made. That is what the child hears every time a parent prays for a cure, because they know no other way to exist. Loving a child with autism means understanding that their autism is included in every action, thought, emotion, encounter, and relationship that they will ever have (Sinclair). To do otherwise proves to the child that they are unworthy of receiving the same love that a “normal” child receives.
A vital aspect of creating an authentic relationship with an autistic child is to come to terms with the fact that when you are feeling like the child does not see you or is unable to respond, it is simply untrue. Just as Sinclair narrates, autism is not an impenetrable wall. This error lies in the idea that the child is incapable of relating at all. In reality, it is just that your shared understanding of signals and their meanings are not shared by the child in the same way that it would be difficult to communicate with someone who speaks a completely different language (Sinclair). I know that the lack of validation from their child is difficult to understand as a parent. It is not easy to put previously conceived ideas of communication aside to develop a new way to communicate and receive validation, but it is not impossible. It is painful to desire a relationship and feel rejected, but often the child is the one being ostracized for being unable to communicate when communication relies on the effort of two people. The non-disabled parent is equally responsible for the lack of validation they are receiving that they are desiring from their child.
To fully communicate, one must give up the feeling of certainty that comes from being on your own familiar territory of language and be open to letting the child teach you their way of communicating and expressing language, and let them “guide you into their world.” And the outcome, if achieved, is still not going to be a “normal” parent-child relationship (Sinclair). That expectation simply needs to be fully abandoned in order to be emotionally available to the child. It ultimately just comes down to the truth that the ways of communication in a non-disabled person and an autistic person are just different, and without that understanding autistic people are being blamed for the close-mindedness of non-disabled people and their relationships can result in unnecessary resentment for reasons that were never their fault to begin with.
In conclusion, pitying autism and feeling sorry for an autistic child will never allow for a healthy relationship to be built. The relationships that feel like there is something missing in them are one-sided and a direct result of the expectations placed upon the child that can never possibly be met. That is where the greatest disappointments in the relationship comes from, not the child’s autism. Sinclair provides insightful advice and guidance from a first-person perspective for developing those authentic and healthy relationships, while also sharing what common misconceptions to ignore throughout that process. I found his words to be indisputably true; autism is not a tragedy. By mourning the loss of the “normal” child that never was, you are disregarding the existence of the child that is right in front you; a child deserving of the same opportunities to develop relationships.
Sinclair, Jim. “Don’t Mourn for Us.” Our Voice, vol. 1, no. 3, 1993.
I pledge that all work is my own.
Word count: 1031
April 29, 2020
Troubleshooting and the Undermining of Social Issues in Dystopia
The definition of “dystopia,” according to Merriam-Webster, is “an imagined world or society in which people lead wretched, dehumanized, fearful lives.” Dystopian literature is a large category, spanning classic works of required high-school reading like 1984 and Fahrenheit 451 and recent popular works of young adult fiction like The Hunger Games and Divergent. At its heart, dystopian literature forces the reader to confront a horrific possible future and contemplate what current trends in our society might lead humanity down such a brutal path. Autistic author Selene dePackh likely intended to shine a light on the disturbing trends and rhetoric surrounding autism today and how they might lead to a dystopia if unchecked in her novel Troubleshooting. However, many austistic individuals already lead “dehumanized” and “wretched” lives as a result of our current ableist and disableist society, calling into question how much dePackh really needed to change the setting to highlight anti-autistic prejudice. By setting its story of autistic oppression in a dystopian future with a dramatically different political system, Troubleshooting lost an opportunity to examine the dystopian society that many autistic and otherwise neurodivergent or disabled people experience today.
In Troubleshooting, the main character, Scope Archer, is branded with a tattoo that marks her as autistic and removes her rights without her consent. She states that “tattooed, [she] was no longer entitled to due process” or the “presumption of innocence” before being subjected to forced medication, institutionalization, experimental procedures, or electroshock therapy (dePackh 5). However, autistic children, and some adults, face the same specters of involuntary abusive “treatment” and institutionalization without due process under the system of guardianship (Autistic Self Advocacy Network 1). “Almost every country” has a system of guardianship under which disabled individuals assigned a guardian “cannot choose where to live, where to work, who to be friends with, and who to marry without their guardian’s consent,” while the guardian is free to ignore the wishes of the person in their custody (Autistic Self Advocacy Network 1). They lose the “usual rights and responsibilities” of citizens without being legally recognized as “no longer a citizen” (dePackh 4). The law does not announce it is taking away the rights of disabled and autistic people by declaring them no longer citizens or branding them with tattoos. DePackh does not draw a comparison between the tattoo system and the guardianship system; she does not discuss how one led to the other, the ableist ideas underlying both, or the similarities between the two. A reader with background knowledge of guardianship can draw the parallel, but one of the biggest problems with guardianship is how little the general public knows about it. Without this knowledge, the tattoo and its accompanying restrictions simply become more set-dressing that establish how terrible the book’s society is, without prompting introspection or reflection on its contemporary precursors.
Troubleshooting does later engage with neurotypical guardianship of autistic people, but again renders its criticism irrelevant through its future setting. Scope has trouble living independently, particularly keeping track of monthly expenses, as a result of her autism. To deal with this, she takes in and ultimately marries an allistic man who handles the tasks she has trouble with. He quickly becomes abusive and controlling, and Scope has difficulty escaping him. This is an unfortunately common situation: some estimates place disabled people at almost twice the risk for intimate partner violence compared to their non-disabled peers, and even conservative estimates place them at a significantly higher risk that others (Breiding and Armour 455). Disabled people are at risk for intimate partner violence in part because their “increased dependency on others for long-term care” makes it difficult for them to leave abusive partners (Nosek et al. 178). The University of Michigan notes that disabled or elderly survivors requiring additional resources can add yet another barrier to escaping abusive relationships alongside those, like financial dependence and the fear of retaliatory violence, that their neurotypical and able bodied peers also face (“Barriers to Leaving”). However, dePackh undercuts this important point by explaining Scope cannot escape because “new domestic violence laws [don’t] favor” her (emphasis added), making it a recent development only relevant to the society and legal setup of the book (dePackh 168). This implies that before the dystopian future detailed in the book began, Scope would have handily escaped from her abusive relationship. Scope’s relationship could have played out along similar beats in today’s society, considering the numerous barriers to leaving an abusive relationship and the disadvantages disabled people have when navigating the law and dependence. Instead, Troubleshooting ignores the complex forces that push autistic people into abusive relationships and limit their ability to escape, replacing them with a clear-cut law passed by an openly misogynistic and disableist government.
By placing her narrative against a backdrop of a dramatically different future, dePackh makes her points on the treatment of autism feel irrelevant to the present sociopolitical system. She fails to connect the issues in the novel to their predecessors in contemporary America. Although readers with background knowledge of autistic issues or disabled advocacy may be able to make these connections, the text itself fails to illuminate them. This is particularly odd because the future described in Troubleshooting is not a distant one where current ideas of autism are forgotten. The narrator and protagonist is 15 in 2031, and the book was published in 2018, meaning that the United States completely transformed over Scope’s short lifetime from our current society to the one depicted in Troubleshooting. Despite this tremendous change all occurring while she was alive, Scope treats society as if it has always been this way, which might have been a powerful commentary on how the dystopia described in the book is not so different from modern America to an autistic child in the hands of an ableist caregiver—if the novel had ever mentioned this implication of Scope’s age. The short timeline could have helped to emphasize how close to dystopia the American political system is for autistic people already, but instead it serves to detach the world of the book from the real world through distracting, improbably radical shifts in the way the United States is structured. Readers are not left realizing how close we are to the world of Troubleshooting or questioning what part they play in preventing such a future. Instead, they are simply glad the world is not like that.
Word Count: 1057
I hereby declare upon my word of honor that I have neither given nor received unauthorized help on this assignment. -Abigail Weber
“Barriers to Leaving.” Abuse Hurts, Regents of the University of Michigan, 2009, www.stopabuse.umich.edu/about/barriers.html. Accessed Apr. 28, 2020.
Breiding, Matthew J. and Brian S. Armour. “The association between disability and intimate partner violence in the United States.” Annals of Epidemiology, vol. 25, no. 6, June 2015, pp. 455-457. ScienceDirect, doi.org/10.1016/j.annepidem.2015.03.017.
“Dystopia.” Merriam-Webster.com. Merriam-Webster Incorporated, 2020, www.merriam-webster.com/dictionary/dystopia. Accessed Apr. 28, 2020.
Invitational Summit on Supported Decision-Making and the Transition to the Community: Conclusions and Recommendations, October 18-19, 2016, Autistic Self Advocacy Network, June 7, 2018. autisticadvocacy.org/wp-content/uploads/2018/06/SDM-Summit-Conclusions-and-Recommendations.pdf.
Nosek, Margaret A., et al. “Vulnerabilities for Abuse Among Women with Disabilities.” Sexuality and Disability, vol. 19, no. 3, Sept. 2001, pp. 177-189. ProQuest, DOI:10.1023/A:1013152530758.
As I was reading Ari Ne’eman’s piece on the conflicting narratives of Neurotypical and Autistic individuals, I was reminded of research I did on the book The Curious Incident of the Dog in the Night Time, specifically in regards to the author Mike Haddon’s writing process, and how he actually did very little research when creating the character of Christopher Francis Boone. At the time of my digging into the book’s history, I was impressed by Haddon’s stance that he felt he did not need to perform in-depth research because the autism spectrum is so broad and vast that there is no singular set of requirements for an autistic individual to have, and the critical response to the book led me to believe this was a valid stance to hold. However, after reading Ne’eman’s piece, I have come to wonder if this was truly the best course of action for him. In this essay, I will use Haddon’s Curious Incident to discuss the merits of autistic consultation in media and why I believe that the story of Christopher Boone is one of the better depictions of autism, despite the ways in which it could have benefited from an insider perspective during the writing process.
Christopher Francis Boone is, in no uncertain terms, a savant; in many ways, he is a stereotype of autism, gifted in math, a personality built around the logical world which falters and fizzles out when faced with emotional spontaneity and anything he cannot reason his way through. To Ne’eman, this in and of itself might be a piece of damning evidence in condemning Curious Incident alongside other stories about autism written by neurotypical individuals, and I sought out critique of the book written by individuals on the autism spectrum, in search of a more personal view point. In researching this, I came across a blog post by Nomi Kaim, an autistic individual, which focused on her reaction to the character of Christopher. One of the first things she brought up was the ways in which Christopher is a textbook example of an autistic individual;
“Many of Christopher’s character traits fit the textbook definition of autism. He has profound difficulty communicating and interacting with people, including overly literal interpretation of language; difficulty interpreting gestures and facial expressions; and an inability to take other people’s perspectives. His speech is excessively formal, and he is incapable of social spontaneity or reciprocity. He constantly misses the big picture, or context, of what is going on. He fixates on a few themes he cannot let go of, rocks or groans when overwhelmed, and is hypersensitive to sound, smell, and touch.” (Kaim)
However, she spends just as much if not more time talking about the depths of Christopher’s character, and the ways in which he breaks the mold pushed so often by neurotypical authors. She relates to his confusion born from vague terms like “keep off the grass”, his love of animals, and the way he uses logic and reasoning to make his way through an emotional world. Yes, this is only one kind of autism, but it is a portrayal of autism that resonates with real individuals. One thing that Curious Incident succeeds in, which I think Ne’eman would agree with, is the way that those around Christopher interact with him. One of the key goals of autistic self-advocates is to the push for “both support and acceptance throughout society” (Ne’eman). This is, I feel, one of Curious Incident’s most noteworthy triumphs. Christopher’s parents, Ed and Judy, both strive to support Christopher to the best of their abilities, within realistic limitations; Ed cooks the simple meals that fit within Christopher’s particular palette, while Judy does her best to understand Christopher without allowing her own neurodivergent traits to get in the way. Judy in particular was an interesting character to me because of how far from the stereotype of a “refrigerator mother” she is.
If anything, she cares far too much, without any outlet for the ways in which she cares. Christopher, like many autistic individuals, rejects her offers of physical affection, and lashes out when she tries to touch him without consent, yet as the book progresses she makes strides in learning about Christopher and his boundaries so that she can be the best parent she is capable of being for him.
When Ne’eman talked about those who “define disability not according to its effect on individuals with disabilities, but on the basis of how it is perceived by those around them”, I was prepared to reread Curious Incident with a critical eye, remembering a good deal of time spent on how Christopher’s parents reacted to his unique sense of self, but found that their reactions to him were often background noise compared to the way the book focused so heavily on Christopher’s life and the way autism effected it. It left me wondering how Haddon had managed to write a story that seemed to succeed in its depiction of an autistic character when he didn’t even go into it with the intention of writing one. For the most part, I agree with Ne’eman’s assertion that it is the author’s moral obligation to consult autistic individuals whenever they seek to represent autism in the literary space, yet somehow Haddon created a character that resonated with many and disturbed very few, without having done so.
I am led to believe the aspect of this book which aids the most in its success in depicting an autistic character is the fact that it is told from a first-person perspective. There is never as large a focus on any aspect of the world as there is on Christopher and his perspective of it. He is the most important character, and the book frequently asserts his competence and independence, while balancing this out with his limitations, such as the times in which he is overstimulated by loud noises and foreign environments. These limitations, however, never hinder Christopher so much that he cannot accomplish his goals, which goes a long way in establishing Curious Incident as one of the more positive representations of autistic characters.
Ne’eman spends a large portion of time in his Dueling Narratives essay discussing who has the power to control the narrative surrounding autism; that is to say, whose voice is most prominent, neurotypical individuals speaking for autistic individuals, or those autistic individuals themselves. Curious Incident is a strange case in that it does not truly fall into either of these categories; though the story is told from the perspective of an individual on the autism spectrum, can it truly be considered a story with an autistic voice when it was written by a neurotypical individual? One argument I make in defense of Curious Incident is based around the following quote, also used in Dueling Narratives:
“The tragedy is not that we’re here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?” –Jim Sinclair, Our Voices
Haddon may not be an autistic individual, and he performed the minimal amount of research in writing one, and I find this to be a fault of the book, in that Christopher is still a savant, a child so talented in mathematics that he goes on to take college levels classes as a middle schooler. However, in much the same way Ed and Judy Boone desperately try to create a place for their child to be accepted in the world, Haddon is like a third parent to Christopher, crafting a realistic literary world that is not built for him, but making sure that he is strong enough to attempt to carve out a place for himself in spite of this. The book would have benefitted from an autistic perspective in the writer’s room, and this is not a statement I consider subjective; there is always room for improvement.
However, Haddon deserves at least a portion of the applause he has received for creating a character who is far more than the few stereotypes he fits into. I agree with Ne’eman, that for the most part autistic perspective is a requirement in the creation of autistic characters, and Christopher as a character could only have benefitted from this. Curious Incident’s success is in spite of the minimal research done, not because of it, and this is a fact that I stand by.
I would love to hear any thoughts Ari Ne’eman has on Curious Incident. It would be fascinating, I think.
Word Count: 1427
English 384-Section 01.
April 27, 2020
Word Count: 1225
Final Exam Essay: Prompt #3
In our society today, there is the beginnings of understanding for Autism and those who have been diagnosed on the Autism Spectrum. While we continue to see much misunderstanding within society at large, including those who fear Autism and parents who wish to blame their child’s diagnosis on an outside source such as vaccines, others chose to see the individual as a person instead of looking at them through a label from the spectrum. During the Great Depression of the 1930s, many states, including Virginia, utilized Eugenics programs as a means of punishing those whom the state saw as inferior genetically to the average person. In John Steinbeck’s Of Mice and Men, we see hints of the character Lennie having traits which lend him to be on the Autism Spectrum, and how society viewed him as a menace because of his intellectual challenges. George would get frustrated with Lennie at times throughout, only to then see that Lennie was keeping what George taught him to heart. Yet it reflects how both historically and in the modern day, there is still much which needs to be done to raise awareness and end the negative views towards those who have been diagnosed on the Autism Spectrum.
While the novella remains a popular story for many students throughout the country, there are those who identify with Lennie and his personality. Throughout the story, he is treated as a subhuman character by others, including George at times who treats him as a mere child and not an adult. One such example near the start of the story was when George discovered that Lennie had “rescued” a dead mouse and was keeping it in his pocket as a pet. When George had thrown it away a second time, he then heard Lennie begin to cry at the thought of no longer having the mouse. George talked down to Lennie by then saying “Blubberin’ like a baby! Jesus Christ! A big guy like you” (Steinbeck 9). Indeed, Steinbeck had even dehumanized Lennie at the very beginning, comparing Lennie to a bear when he described Lennie’s dragging of his feet while walking as “the way a bear drags his paws” (Steinbeck 2).
Because Steinbeck frequently describes Lennie by his appearance throughout the novella, the reader risks developing, or ratifying, notions that Lennie is not normal. This in turn risks a subconscious determination of seeing others in a negative light based solely upon their differences to what society considers a normal human being. During the Great Depression, the reader also would have been confused about how George and Lennie were even together, as the common practice of families back in that period was to send people with disabilities to an institution. But importantly, though George at times is harsh in his attitude towards Lennie, he does care about Lennie and wishes to prove society wrong about Lennie. Though he told Lennie to be quiet, it was likely due to George knowing that is Lennie had spoken upon arrival, the ranch would have sent them away out of fear and the labels of society towards people like Lennie. George, however, wishes to prove the ranch owner, and society in general, that Lennie is just as capable of hard work, or perhaps even more capable, than the average ‘normal’ person. While Lennie is a hardworking individual on the ranch, George must guide him throughout and remind Lennie of his tasks to avoid getting fired. Lennie in turn looks at George with trust and relies upon George to help him in his daily activities and decisions.
There are several aspects to Lennie’s behavior which lends credence to the idea that his condition falls upon the autism spectrum. He is frequently seeking out the repetitive behavior throughout the story of wishing to pet soft items, which can also be thought of as self-stimulating (Murray 14). As previously noted, he is introduced to the reader with a dead mouse in his pocket which he pets frequently ass he and George are walking along towards the ranch, with George then throwing the mouse away across the river, only for Lennie to walked across and recover the dead mouse whilst fetching wood for a campfire. When George then throws the mouse away for a second time, Lennie argues that it is a comfort for him, He tells George that he “wasn’t doing anything bad with it… Jus’ strokin’ it,” which is our first view into the repetitive and comforting behavior which Lennie seeks out (Steinbeck 9). The reader is then informed by George that Lennie had destroyed a stuffed toy mouse which had been previously given to him. This behavior is reinforced by Lennie being too hard on his petting and stroking of puppies, with another character on the ranch named Slim having suggested that Lennie take a break from petting the puppies, with Lennie explaining to George that Slim told him he “better not pet them pups so much for a while” (Steinbeck 54). To which Lennie eventually kills one f the pups by being too aggressive in his petting.
Lennie continues his desire to seek out and pet soft objects when he comes across Curley’s wife and starts petting and stroking her hair. Unfortunately, when he is told to stop by her, Lennie becomes anxious and fears that she will tell George about his forcibly petting her hair against her wishes, and that George will punish him by not allowing him to pet the rabbits on their future plot of land. He acts out in a panic and ends up killing her, which then causes the realization that George is not going to be happy with Lennie and will punish him.
In Stuart Murray’s book Autism, he notes that autism “isn’t in illness” and that that fact is “sometimes lost in the labeling of the condition as a ‘disease’” (Murray 36-37). He goes on to then explain that even in the modern society, people tend to fear and misunderstand autism due to the fear of the unknown. Though our understanding has improved, there are many parents and general members of society to this day who fear autism as a disease, and are wary of those who have been diagnosed on the higher end of the autism spectrum, while certain other parents feel self-blame in their child being autistic (Murray 59).
In closing, though we as a society have made great strides with the arrival of advocacy groups intent on educating the greater public and families about autism, in the hopes of a wider acceptance of people as being equal and normal with those who are not on the autism spectrum, especially when compared to the 1930s when individuals were simply hidden from society under the guise of being “feeble-minded,” we have a long way to go unfortunately in obtaining full acceptance and equal equity to all Americans whether on the spectrum or not. Though George did work hard to try and bridge the gap between Lennie and the other workers and the owner of the ranch, he did achieve some successes along the way before the end of the story, notably with Lennie being allowed to continue working instead of being sent off upon noticing that he wasn’t “normal” in the eyes of society. And continued work will be needed to ensure full integration and acceptance going forward.
Murray, Stuart. Autism. Leeds: Routledge, 2012.
Steinbeck, John. Of Mice andd Men. Penguin Books, 1937.