https://docs.google.com/document/d/1Gem96mYhtUxcBfnNYLzSAJDa_3kYmAEUPNSC0mW3b_8/edit?usp=sharing
(Link is pdf version of paper)
Amanda Smith
ENGL 384
Foss
April 20, 2019
Autistics as Advocates
Autism is often misconceived as a disease that inhibits a person beyond belief. A person that cannot communicate, cannot read social cues, cannot have emotion, cannot be imaginative, and cannot behave normally according to society’s standards. Majority of non-disabled “ablest” people continue to perceive the autistic individual with this misleading view of incompetence as if autism is something of a great tragedy based on the written accounts and experience of ablest. Fortunately, autistic individuals are breaking these bounds made by the ablest with self-advocacy. Making their voices heard and known, more and more autistic people are beginning to publish their own words, emotions, experiences, and views as an individual with Autism. Recent publications by authors with autism spectrum disorder (ASD) are showing the world that they and other autistic individuals cannot be defined by the doctor’s prescribed diagnoses or ablest views. Looking at written works by authors D.J. Savarese, Rajarshi Mukhopadhyay, and Craig Romkema it can be seen that these stigmatized characteristics of autistic individuals are not correct. These autistic writers speak up and prove to their audience that they do have emotions, can illustrate a new and unique point of view as a person with this disability, and describe their thoughts and behaviors with imagination and intellect despite the views and labels given to them by the able-bodied society.
Abandoned by his birth parents and presumed incompetent at an early age, David James (D.J.) Savarese found not only a loving family to adopt him but also a life in which he could communicate through a text-to-voice synthesizer. As he makes his way through his education in public schools and faces society’s obstacles of inclusion. Through the determination of fighting society’s standards, D.J. creates his voice through poetry. When D.J writes poetry he explains that “poetry is autistic: it revels in patterned sound. For me, poetry is more natural than spoken language, maybe because I spent so many years hearing it without comprehension” (Savarese, “Poetry”). Throughout his writing, in high-school, he had been working on comprehension of material, one of which was through a poem called “Alaska”.
The poem’s topic was supposed to be about The Iditarod Trail Sled Dog Race, but D.J. took the poem into a different direction of self-advocating. He states, “icebergs hear the cries of the hurt/just like they’re trying really, really to be free” (Savarese lines 1-2). These lines can be interpreted as imaginary illustration of society’s exclusion of D.J. pressing on him, and D.J is calling out, wanting those in his society to listen to him and communicate with him. He personifies society as the cold icebergs and the “hurt” as himself. His dad analyzes D.J’s work and agrees, saying he’s “stag[ing] the problem of separation as one confronting the natural world” (Savarese 279). He is telling society to communicate with him and not be afraid to.
Further, into the poem, D.J shows how his text-to-voice facilitator helping him communicate by saying, “branches they try to yearn freedom but they fear it/trying to get freed points out their great/hurt yearning long, long branches that live” (Savarese lines 6-8). Once again, D.J. is the “hurt” as a nonverbal autistic individual who has the means to communicate. The branches encapsulate the idea of his facilitator giving him the ability to reach out and connect or socialize with people in society, but they fear it, as he puts it. D.J’s words represent the idea that even though nonverbal autistics cannot talk with their vocals, they have the ability to communicate and hold a conversation by other means. His poem holds a deep emotional meaning with words such as “yearning” (Savarese line 8) and “cries” (Savarese line 2). D.J. has the means to hold emotional, intelligent, and even poetic conversations despite what non-verbal autistics have been labeled as (don’t know how to connect with others, lack of emotions). Through his poetry, D.J demonstrates that he is not defined by his diagnosis and becomes a leading advocate on behalf of other non-speaking autistics. Similar to D.J’s another young poet, Tito Rajarshi Mukhopadhyay, tries to connect with society through his poetry.
At the age of three, Tito Rajarshi Mukhopadhyay was diagnosed with what the medical community would describe as severe or low-functioning autism, a nonverbal communicator. He grew up in India and came to America with his mother, who taught him his reading and writing skills. During his developments in reading and writing, Tito began his writing journey and wrote a series of five poems, one of these in particular called, “Misfit”.
The poem, “Misfit” is set outdoors in a peaceful environment where men, women, and birds reside, where the earth is “turning and turning/The stars receded, as if/Finding no wrong with anything” (Mukhopadhyay lines 1-3). The narrator, Tito, places himself into this setting and describes his actions with the world around him. Tito says, “Birds flew by all morning/The sky lit/From the earth’s turning and turning/My hands, as usual, were flapping/The birds knew I was Autistic/They found no wrong with anything” (Mukhopadhyay lines 4-9). It can be interpreted that in this section of the poem, Tito is describing his ‘flapping’ as a way of interacting with the birds or expressing his emotions in his own interpretive way. The birds see this and know he is who he is, and see no wrong with his expressions. This is how society should be treating Tito, but instead, they gawking him.
In the lines, “Men and women stared at my nodding/They labeled me a Misfit/(A Misfit turning and turning)” (Mukhopadhyay lines 10-12) The men and women in this section are the society Tito (or autistic people in general) deal with daily. The people are the ones who smack this label of ‘misfit’ onto him while staring at the abnormality of his expression. Tito faces this maltreatment and begins to feel isolated and exclusion as he calls himself a ‘misfit’. By putting the accepting view of the birds first, and the men and women’s reactions last, the next lines become Tito’s self-advocacy.
Tito reflects on what he has just realized and witnessed. He says, “ I found no wrong with anything/Somewhere a wish was rising/Perhaps from between my laughing lips/Why stop turning and turning/When right can be found with everything” (Mukhopadhyay lines 15-19). Here Tito is recognizing the ill behavior of society, but wishing and hoping that people will finally realize there is nothing wrong with the way he and other autistics expresses themselves. The rightness he is talking about is that he is dissimilar from the normalcy that society compares him too. But he is a person too, who is intelligent and can speak for himself. In this poem, Tito is indicating that he is not someone to be excluded, he lives and communicates in the world just as anyone else, and society can find the rightness in this. Just like Tito, Craig Romkema shares his thoughts on the labels he had been identified by.
Craig Romkema had developed a cerebral palsy and movement disorder that made fast typing difficult. He also had sensitivities to sound and light and according to his words, a tendency to act more autistic under stress. He knew that I had great challenges ahead of him as he goes to high school and college (Authors 2011). Through Romkema’s journey through his high school and college career, he faces many opinions, labels, and diagnoses. Through self-reflection, Romkema writes a poem called “Perspectives” talking about what able-bodied people have diagnosed and labels him as. At the beginning of his poem, he is in his room doing nothing but “watching the fluttering/of a pen between my incessant fingers” (Romkema lines 1-3). As he watches himself do action, he recalls what others might have labeled his pen fluttering:
Self-stimulation, some experts call this,
Eastern mystics might call it meditating,
Psychologists used to blame it
On “refrigerator mothers”
Optometrists prescribe special exercises and glasses,
Researchers recommend vitamin A.
From the beginnings of my differentness, I remember
Doctors, students, therapists
Measuring my head,
The tightness of my muscles,
The tracking of my eyes,
The dysfunctions of my stomach (Romkema lines 4-15).
Romkema has had every medical and personal opinion about the way he acts and how they relate to his autism. From what he sees as a normal flicking of the pens between his fingers, what any ablest may consider normal if it were not for his disability, he finds that all his interaction with society has been about labeling him and fixing his ‘differentness’. These lines indicate that the narrator is fully aware of what people are saying; that “others not acknowledging I understood every word” (Romkema line 18). The people believe that he needs to be fixed with vitamins and special exercises. They treat him like an experiment rather than a person as they measure and track the functions of his body. The relationships he has encountered have all been uncompassionate; as a condition rather than a human. Even with his parents, they treated him as if he wasn’t a person, he says that “somehow we would find each other/Connect/The way they could with the sisters and brother/Following me” (Romkema lines 28-31). Nevertheless, Romkema advocates for himself as he describes his experiences and views as an autistic man.
In the next few lines he states, “ I am not only subject/but researcher/Giving valuable feedback/On treatment results/Sharing the inside view/Learning from the outside” (Romkema lines 38-43 ) and also saying that, “now I can type thoughts, questions/Responses/Enter discussions on Shakespeare and/Algebra/Vote, give opinions on government actions/Now my mind is free, is free” (Romkema lines 46-51). He is telling society and the people around him that he is able to communicate, learn, discuss, and give back. He is not defined by his labels given to him from his disability and knows he can be just as capable as any member of society. Now he’s contributed, and self-advocating for himself and contributing to research and his studies. By writing this poem Romkema takes on the role of an advocate for all autistics facing over-diagnosing.
Autism is not a fatal condition and society cannot judge autistics capabilities and capacity for self-insight despite what the doctor’s prescribed diagnoses or ablest views say. D.J. Savarese, Rajarshi Mukhopadhyay, and Craig Romkema’s poems give a voice to autistic individuals that are dealing with the able-bodied repression. By creating these poems, they show that they and others have emotional thoughts and experiences and are able to communicate these intellectual and poetic ways. Not only do they give a voice, but they call out society to tell them that they can communicate, they can hear what is being said about them, and they want to say it’s not true, and they want to be heard.
Works Cited
Savarese, D.J. “Poetry.” Deej, www.deejmovie.com/poetry/.
Savarese. D.J. “Alaska” dis/lit 19, 27 April 2019, http://courses.chris-foss.net/dislit19/wp-content/uploads/2019/04/djs-1.pdf
Mukhopadhyay, Tito Rajarshi. “Five Poems.” Disability Studies Quarterly, dsq-sds.org/article/view/1192/1256.
Authors, JKP. “‘I Am Not a Statistic or a Category…By God’s Grace, I Am.” – Craig Romkema, Graduating Class of 2011.” JKP Blog, 8 June 2011, www.jkp.com/jkpblog/2011/06/art-craig-romkema-college-graduation/.
Romkema, Craig. Embracing the Sky: Poems beyond Disability. Jessica Kingsley Publishers, 2002.
Word Count: 1,787
I pledge. AJS