madisonm

Madison’s Final

The History of Autism: A Shaky Foundation

To understand something in the present, it helps to look at its roots. The cultural ideas and stigmas that are held today are at least somewhat a product of history. Historically, autism has been a mystery and today there is still much we do not know about how it functions or where it comes from. However, when research first began to circulate surrounding autism, much of that information was inaccurate and ultimately harmed future understandings of autism, repercussions we are still feeling today despite advancements. The history of autism research can be seen as the driving force behind the apprehension parents have surrounding communicating with and building a relationship with their autistic child. As a result of early acclaimed researchers pointing a finger at the parents of autistic children to blame them for the condition, there has since been a culture which fears raising the autistic child and pushes for a ‘cure’ to end a presumed suffering.

Psychologists Leo Kanner and Bruno Bettelheim’s widely regarded ideas have laid the foundation for a problematic understanding of how autism functions and where it comes from. Up until the 1960’s, Kanner asserted the belief that parents are responsible for their child’s autism. Kanner once said in an interview that autistic children were a product of, “parents cold and rational who just happened to defrost long enough to produce a child” (Murray, 54). He believed that the parents of autistic children were cold and distant, thus producing similar traits in the form of their autistic child. Bettleheim held a similar viewpoint, asserting that autistic children “withdraw from the world” as a product of parents who are unable to bond with their child, and that often development was stunted in autistic children due to the parents’ own “inadequacies” (Murray 56-57). Given autism was largely unstudied and therefore not understood, Bettleheim and his work were regarded highly by the public and his opinions were taken as fact (Murray). The blame that was placed on parents by these researchers has heavily influenced the way parents today understand autism, and consequently, the apprehension they feel about building a relationship with their autistic child.

The responsibility placed on parents for causing their child’s autism coupled with the idea that a child is ‘trapped’ within their autism lead parents to push for the cure. The fact alone that blame or responsibility was placed at all reinforces that autism is not a positive presence, as if someone must be punished for its existence. And according to Kanner and Bettleheim, the blame lied with the parents. It is natural for parents to want to fix things for their child, to rid them of any suffering. Since there are inherent ideas of pain and suffering tied to disability and difference, including autism, parents have a tendency to focus on how they can end that suffering and return their child to normal. Murray writes, “For some, accepting that they were to blame was a price worth paying if it meant that their child could be ‘rescued’ from autism” (Murray, 58).The idea held that with therapy, the “lost” child could be “brought back” (Murray, 57). Of course this belief is harmful and inaccurate, as there is no “normal” child trapped within the autism, however the popularity of that notion leads parents to feel urgent about curing their child’s autism rather than trying to understand it as an inseparable piece of their identity.

The history of autism and the belief in the cure have made it easier for parents to focus their energy on who their child isn’t rather than who he/she is. Autism, much like other neurodiverse perspectives, is seen for its deficits first and foremost. Nonverbal and atypical communication is rarely seen positively, but rather as though something is lacking from the individual. This expectation of normalcy hinders parents amongst others from trying to understand autistic communication and build a relationship with the autistic child. Writers and advocates such as Jim Sinclair are helping to rewrite this history and alter the way we understand the autistic child. First, it is especially important that parents understand the inseparability of autism from the autistic child. Jim Sinclair importantly notes in Don’t Mourn For Us, “when parents say, I wish my child did not have autism, what they’re really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead” (Sinclair, 1993). Although these parents might not understand the implication behind their words, it does not change the fact that they are implying they would rather have a ‘normal’ child than try to understand and relate to their autistic son or daughter. Furthermore, it is important that parents are willing to forgo their own expectations of ‘normalcy’ in order to venture into their autistic child’s territory. He notes, “You’re going to have to give up the certainty that comes of being on your own familiar territory, of knowing you’re in charge, and let your child teach you a little of her language, guide you a little way into his world” (Sinclair,1993).

It is impossible to completely rewrite the history that is responsible for inaccurate information and ideas about autism, but we can learn to put what we think we know aside and step into the autistic perspective. Historically, parents have been blamed for what was presumed as a condition that caused their child to suffer and lack normal social and communication skills. There is no question that this past has been a catalyst for the apprehension parents still hold today about connecting and communicating with their autistic child. The belief in the normal child being ‘trapped’ and the cure have made it possible for parents to focus attention on autism as a deficit rather than a benefit. However, with more insight into the autistic perspective as shared by those on the spectrum such as Jim Sinclair, parents may be able to take agency and find the courage to meet their child where they are at. As noted, difference is not an “impenetrable wall” (Sinclair,1993), but communication can happen and relationships are more than possible.

Works Cited:

Murray, S. (2012). Autism (The Routledge series integrating science and culture). New York: Routledge.

Sinclair, J. Don’t Mourn For Us. Autism Network International newsletter, Our Voice, Volume 1, Number 3, 199.

word count: 1020

I pledge, Madison Moyer.

Madison’s major paper

Invisible Disability, Invisible Identity

Invisible disability is not automatically apparent to our eyes. This can include physical and mental conditions such as PTSD, anxiety, depression, chronic pain, and even vision or hearing impairments. So much of how we understand disability is rooted in its visibility. We tend to base our ideas of a person and their capabilities first on their appearance. It is important to understand how the invisible disability is socially constructed, which then allows for conversation about the problems surrounding this identity. Using queer studies as a model, it is easy to draw parallels to better understand how the invisibly disabled identity functions, and a lot of times, why people do not claim it. So often, ideas of “normalcy” and the need for “proof” plague our understanding of what it is to be a disabled mind or body. Through these beliefs, we create a culture that invalidates the invisibly disabled and prevents these individuals from claiming their identity.

If we see disability in general as socially constructed, we can break down how the invisibly disabled mind and body are understood in society, and thus how our ideas about these bodies/minds impact the person with the disability, specifically the individual’s identity. In Disability in Theory, Siebers states that, “social attitudes and institutions determine far greater than biological fact the representation of the body’s reality” (Siebers, 173). Thinking about this in terms of invisible disability, the social construction happening has much to do with ideas about what a “normal looking” person should be able to do. Before a person’s invisible disability is exposed, they are automatically understood as abled. He goes on to say, “the dominant ideas, attitudes, and customs of a society influence the perception of bodies” (Siebers, 174). Given we live in a society in which able-bodiedness is the default, a difference in appearance is typically an indicator that a person deviates from the norm, and consequently, that person is labeled an “other” and their identity is heavily influenced by this label. Additionally, the social attitude regarding pain and suffering plays a large role in our construction of the disabled body. Siebers writes, “the human ego does not easily accept the disabled body” (Siebers, 176). This is in part due to the belief that disability is pain, and humans are quick to reject both physical and mental or emotional pain. However, if much of an individual’s identity has to do with the pain they experience, in a society where there is an emphasis on the “cure”, to advocate such ideas is to advocate for the eradication of a large piece of this person’s identity. The attitude our society holds about pain contributes largely to the social construction of the disabled body. However, the notion that disability is pain and nothing else is harmful and inaccurate. There is so much more to the disabled identity than the amount of discomfort one feels. On the other hand, ignoring the presence of pain at all can be just as harmful when trying to understand what it is to be an invisibly disabled identity.

It is important that the hidden disability is acknowledged for its ability to cause as much pain as a physical one. In her article, Invisible Disability, Davis importantly notes, “People whose disabilities are not generally perceived by others do not, for that reason alone, find it easier to minister to themselves or to engage productively and effectively in the world without having to endure pain, discomfort, and exhaustion” (Davis, 154). It can be invalidating to the invisibly disabled identity when the pain they feel is not taken seriously simply because they do not appear disabled. In the case of mental illness, oftentimes both mental pain and physical pain are at work, as depression, anxiety, and PTSD can cause physical symptoms that lead to discomfort. To assume that an invisible or mental disability has nothing to do with the body is ignorant, as the mind and body are connected and they rely on each other to work. One cannot drive a car properly with an engine that is uncooperative, and it is no different if the mind is impairing the body from functioning. The pain that the invisibly disabled experience is just as valid as that of other disabilities, and just as central a part of their identity.

The identities of those with invisible disabilities can be understood using similar terms and experiences to ones frequently discussed in queer studies. Similar to how queer identity has to be claimed through “coming out”, the invisibly disabled must also claim their disability. Until these identities are claimed, it is assumed that the person holding them is “normal”, that is, abled. The parallel here allows us to better understand some of the issues the invisibly disabled face. Ellen Samuels discusses the connections between the disabled and queer identities in My Body, My Closet. One connection she notes is that similar to queers and queer culture, individuals with disabilities may find it hard to access crip culture (Samuels, 234). This may be especially true for the invisibly disabled, because they are not automatically seen as having a disability, so they have to go the extra mile to prove themselves as being a part of that shared experience. This “presumption of sameness” (Samuels, 236) not only alienates people from being a part of a community, but it can also create cognitive dissonance in the person with the invisible identity. That is, they are being told they are one thing by outward notions of normalcy, yet they feel a different way on the inside. The “presumption of sameness” and the cognitive dissonance that follows is something that could easily plague the mentally impaired especially, given that tangible or physical evidence of pain is little to none. To the abled eye, there is nothing stopping someone with invisible disability from carrying out everyday life, yet so many people who struggle with depression, anxiety, PTSD, and so on have a difficult time completing simple tasks. This appearance of normalcy can be alienating to the invisibly disabled person who tries to access crip culture and be a part of a larger community.

Another parallel between these studies as discussed by Samuels is the idea of “coming out.” In other words, the invisibly disabled identity must be claimed to be seen. Samuels states, “coming out refers specifically to accepting one’s ‘true’ identity and must entail identification with the political analysis of the marginalized group. In both queer and disabled contexts, however, coming out can entail a variety of meanings, acts, and commitments” (Samuels, 237). Those who choose to “come out” and claim this identity feel connected to disability or crip culture and the experiences of those who also claim the disabled identity. Coming out for the invisibly disabled can be clarifying and freeing, opening doors for shared experience and a sense of community. However, the process is different and unique for each individual who chooses to disclose their disability, and some choose to not claim this identity at all. Samuels refers to Rosemarie Garland-Thompson’s “coming out process”, in which she did not feel a connection to disability culture at first, but instead felt that her disability was a “private matter” (Samuels, 238). Additionally, Elizabeth Brewer talks about how many psychiatric survivors do not identify with the disabled identity, despite the fact that from a legal perspective, there is a connection between mental impairment and disability (Brewer, 15). Individuals may choose not to come out for the troubling reason that they find it easier to stay hidden.

Often the invisibly disabled will prefer to keep their identities hidden, rejecting the disabled identity all together: “people with hidden impairments often make an effort to avoid the perceived stigma attached to a disabled identity” (Samuels, 240). This can be seen similar to “passing” which is also prevalent in queer studies. The invisibly disabled may find it easier to pass as abled for a number of reasons. It is a personal choice, but one that should be available to those whose disabilities are not as apparent. Samuels shares the experience of Georgina Kleege, a blind teacher who is able to “pass” in certain situations:

“Because my disability is no longer readily apparent, and because it is an illness whose symptoms vary greatly from day to day, I live between the world of the disabled and the non-disabled. I am often very aware of my differences from healthy, non-disabled people, and I often feel a great need to have my differences acknowledged when they are ignored. . . . On the other hand, I am very aware of how my social, economic, and personal resources, and the fact that I can “pass” as non-disabled among strangers, allow me to live a highly assimilated life among the non-disabled” (Samuels, 240).

Kleege talks about how in some situations, she wishes to be acknowledged but she is also aware of how her ability to “pass” is beneficial in her everyday life. She does not quite resonate with the non-disabled, but she is also able to avoid stigma in certain situations and “pass” based on ideas of normalcy. The practice of passing has, “been read as a conservative form of self-representation that the subject chooses in order to assume the privileges of the dominant identity” (Siebers, 240). This can be problematic, especially if disabled individuals are choosing to pass because it is the easy thing to do, and not because they fail to relate to the identity. Choosing to claim the disabled identity as an invisibly disabled person should be that- a choice, and without the pressure that coming out will be more counterproductive than it is freeing.

It can be argued that the “presumption of sameness” that occurs when an invisibly disabled person appears normal and able is actually a positive. If there are no limitations placed on a person solely based on their appearance, that individual avoids stigma. They have more of a choice in disclosing vulnerability if they can pass where the visibly disabled cannot. However, it is possible for the opposite effect to happen, where the assumption of able-bodied can be alienating when a person who is not visibly disabled is expected to function the same way an able-bodied person does, but they cannot. Samuels points out, “Those whose disabilities are invisible may also have to convince other people that they really are disabled, not seeking some special—unfair—advantage: thus, what they must do is meet a burden of proof” (Davis, 154). This pressure to prove is a major reason why an invisibly disabled individual may not choose to claim the identity, despite feeling a part of it.

The invisible disability is socially constructed by our ideas of normalcy and the need for proof. This identity can be compared to queer identity, as they both operate on similar terms of coming out and passing, and how both have their advantages and disadvantages. Although the invisibly disabled have a choice of disclosure when it comes to sharing their disability with the world, this does not automatically mean they are in any easier of a position than those who do not have the choice. It is clear that many invisibly disabled individuals choose not to claim the identity because they feel passing as able-bodied is more beneficial to them than coming out as disabled. The culture we construct around nonvisible pain prevents those who could be a part of this shared identity but choose not to because we tell them their pain is invalid simply because they look normal.

Word count: 1997

Works Cited

Brewer, Elizabeth. “Coming out mad, coming out disabled.” Literatures of Madness. Palgrave Macmillan, Cham, 2018. 11-30.

Davis, N. Ann. “Invisible disability.” Ethics 116.1 (2005): 153-213.

Samuels, Ellen Jean. “My body, my closet: Invisible disability and the limits of coming-out discourse.” GLQ: A Journal of Lesbian and Gay Studies 9.1 (2003): 233-255.

Siebers, Tobin. “Disability in theory: From social constructionism to the new realism of the body.” American literary history 13.4 (2001): 737-754.

I pledge. Madison Moyer.

Madison’s response to Ralph James Savarese’s “Prologue: River of Words, Raft of Our Conjoined Neurologies”

In Ralph James Savarese’s prologue to See It Feelingly, he details his son DJ’s autism as an important spectacle of human empathy, pushing back on the stereotype that autistic people do not feel the depth of emotion the way an able-minded person might. DJ is an important example of how the autistic mind is not closed to typical human emotions, but rather these emotions can be expressed in a neurodiverse manner. Also, Savarese is an important example of what can happen when the able-minded take the time to step into an atypical perspective.

Savarese’s inclusion of DJ’s voice in his prologue begs the notion that just because a person does not communicate in a “typical” way doesn’t mean they don’t have something valuable to say. In the fifth grade, DJ wrote, “First, free people treat my people, very smart people who type to communicate, as mindless,” (17). A ten-year-old advocate already attuned to how he and “his people” are understood in the world. Along with his understanding of his placement in the world, DJ holds an amplified ability to relate to other people, real and fictional. Savarese goes on to point out the repetition of “breath” and the concept of breathing in his son’s writing, which is something he struggles to control as a result of intense anxiety. DJ’s anxiety is often the result of “channeling the traumatic injuries” (17) of the characters he reads about. He is easily overwhelmed by empathy, and he would communicate his understanding of people’s feelings through anxiety-ridden meltdowns. One meltdown in particular almost got him expelled from his middle school, to which he responded with a thoughtful letter to the principal asking for a second chance, but also demanding “respect for underestimated kids” (17). What was seen as a behavioral issue was really the result of a neurodiverse mind experiencing intense empathy.

It is obvious that Savarese takes the time to relate to DJ, really venturing into his territory. Both Savarese and DJ have to experience alien terrain as they try to grapple the world together, and in doing this, Savarese sets a sound example of the give and take that comes when you raise an autistic child. He highlights DJ’s empathy as a strength, saying, “DJ had taught me much about our deepest emotions and their centrality to literature- to all of the arts” (19). Understanding that DJ has a hard time with his readings, Savarese encouraged him to channel his focus on the reading process rather than the content. He even set a dedicated space for the two of them to read together, because as Savarese notes, “I wanted him to feel at home in literature” (20). Savarese says his son’s decision to become a writer was likely a result of him working with DJ to make reading more comfortable. It is important that this prologue not only breaks stereotypes surrounding autism, but highlights a critical relationship in which the abled is willing to step into a neurodiverse perspective. As Savarese and DJ both prove, “simply conforming to the dominant culture is not always a worthy goal.”

I pledge. Madison Moyer

Word count: 517