Author: Clover

A Journey Through Crip Time and Kairotic Space: Four Months in ENG401

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My twelve-week journey through ENG401: Disability Writing and Rhetoric has felt too short, and as my rhetorical skills grow stronger the more I write and study in class, the end of the quarter also draws closer—yet I know that opportunities to apply what I have learned will readily appear as I complete my English Literature degree at Western. Out of everything, I am the most grateful for the rhetorical and discursive terminology and strategy I have learned this quarter in ENG401: such as metis methodology, or the concept of an utterance, or the templates we received October 22nd for reliably articulating theses of academic research papers. So, I’ve taken time alone with my course journal, the piece of writing I am most proud of from any of my classes this quarter, to measure my academic growth as a writer, rhetor, and as a student of disability studies over the last four months. Below, each month I’ve spent in the course has one quote from the prompted journal entries which kicked off each class meeting ascribed to it. I hope that each quote demonstrates in detail my academic position at that time, and each month’s associated motif captures my feelings towards the processes of the course, which I have labeled as Gathering, Observing, Analyzing, and Connecting.

September: Gathering

“Simi Linton’s deconstruction of words as something we understand, but also something we feel—or do not feel—about, inspired me to reconsider the words I use on paper vs. in common speech”

  • Session three, 9/27/21

In September, classes had just begun and I had so much ableist rhetoric and language to unlearn, it was hard to keep my journals free of unintentional yet offensive language towards the disability community. However, my quote demonstrates a close reading of the assigned text, and a resonance with the personal, which is evidence of my willingness to grow as I gathered knowledge and gained familiarity with course concepts (like the social model of disability or passing), earning experience as a rhetor at the same time. At this stage, I was still grappling with the language I needed to make direct and accurate claims about assigned readings.

October: Observing

“In America, the body is taught from the perspective of nondisability, homogeneity, and thought of as one coherent system that cannot function otherwise. This frame of thought approaches disability as a deviation from the ‘true’, otherwise nondisabled self.”

  • Session seven, 10/06/21

October is when I began to gain confidence in my knowledge of rhetorical situations and appropriate disability studies language. In my quote, words such as “nondisability”, “frame of thought”, and “deviation” are such demonstrations of improved rhetorical vocabulary and comfort with DS terminology. By session seven, I was using this more advanced language to make specific assertions about assigned texts, but rarely was able to go a level deeper into analysis.

November: Analyzing

“[viewing] Conference spaces as kairotic spaces put emphasis on their dynamism in joining spontaneity with professionalism.”

  • Session twenty, 11/05/21

In November, class meetings fully expected our engagement in, and development of, analyses of rhetorical situations: from the perspective of the exigence, audience, and constraints, with selected authors of course texts frequently being compared to one another through creative avenues of discourse. My quote shows that by the twentieth class meeting, I was able to develop unique claims about rhetorical concepts and how they interact with real-life scenarios, further proof of my growth as a writer, reader, and rhetor.

December: Connecting

“While [one classmate]’s project focused on communication and coping within relationship categories, [another classmate] was concerned with bringing to light an uncentered issue. So in that way, both sought to educate with their projects.

  • Session twenty-nine, 12/01/21

December—when the course drew to a close! While my quote relates to a peer review and workshop of ENG401’s major project drafts, I feel that it shows my ability to connect metadiscourses within the realm of disability studies. One student’s paper takes an interdisciplinary angle of political science and disability studies, and the other a psychological approach. As of now, I have experience in comparing two things which at face value might seem different. Ease in forming connections with others, and connecting the directions students have taken their final projects back to the content of the syllabus has been the result of my time in ENG401, and I feel this has made me a better writer by any standard.

In truth, the construction of this blog post relies to a moderate extent on skills and strategies I have learned in ENG401. I hope that my course journey provides encouragement in pursuing that which appears difficult, but is manageable with proper organization and assistance. More than anything, I want to thank my professor and classmates for a memorable quarter!

‘Crip Camp’ Could Be a Class Success!

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(Author’s Note: None of the 62 chapters from Keywords are titled “Law”, so I chose Chapter 52, “Rights”, by Maya Sabatello, because I’m guessing that’s what the professor meant. It’s the closest, anyway.)

Hey You, Teacher,

If it were implemented in your Social Studies II class curriculum this semester, I think Crip Camp (2020)—yes, that Oscar-nominated, Sundance premiere documentary that was produced by the Obamas—would be of substantial educational value in teaching the full history of the American civil rights movement to your classroom. 

First, let me offer that the disabled position in America remains largely unacknowledged in our humanities classrooms. The significant piece of American history covered in Crip Camp is retold colorfully by the leading rights activists for Disabled in Action, including Jim LeBrecht, Judith Heumann, Corbett O’Toole, Ann Cupolo Freeman, and Denise Sherer-Jacobsen, ALL of whom are accomplished authors in the field of disability studies as well—which is something to provide extra material for your potential unit on disability rights. It’s a fast-paced documentary about the fight for American civil rights, filmed from the ground floor of the sit-ins and the sidewalks of the protests.

The documentary follows the above cast during their youth at the disability-centered “Woodstock” (Ann Freeman) which brought them together and shaped their confidence—straight on through their fight to get Act 504 signed, a critical piece of civil rights legislation which was first vetoed by Nixon (quote: “it would be just impossible in terms of cost”), but later weakened and delayed under Secretary Joseph Califano, with all attempts to enforce the act abandoned by Reagan in a horrendously bigotted effort to deprive the largest minority group in the country of their rights to protection from discrimination in federally funded public spaces (and in organizations and businesses nationwide). Because the fight still continues, your classrooms, were they to include Crip Camp in their curriculums, might notice one term continually appearing—rights. But the fight for disability justice does not only include these adoptions into law, like Act 504. Rights is more complicated than that; which is almost exactly the message of Crip Camp going into today’s world. Perhaps it would allow your students to expand their perspectives on discrimination, society’s attitudes, and law.

Maya Sabatello’s chapter “Rights” from Keywords for Disability Studies offers that “basing disability claims for justice merely in terms of legal rights, without a concept of moral rights, is inadequate”, because if the legal rights were boiled down to their core, it would be exposed how “Traditional Western liberal theory assumes that rights are private, individualized, and autonomous”. Contrary to this, the interest of disability activists, including those in Crip Camp, has always been on “group rights”, which “focus on collectives that have shared interests and aim at protecting cultures, ways of life and practices that are presumably not sufficiently protected by the assertion of individual interests” (page 159). So, as Crip Camp’s core activists (along with machinist unions, Black Panthers and supporters) persist through three weeks of hunger striking, months of government sit-ins, and a generation of “really serious, radical action” (Jimmy LeBrecht), they fight for their rights in the law, but also for their rights to exist together as an identity without friction or hardship. Sometimes this can be as plain as the right to not be “sidelined” (Judy Heumann) in a public space with your presence, but other times these rights are less obvious to the nondisabled, like the right to privacy. As one Camp Jened camper, Nick, put it: “I think what Nancy is talking about is that everyone in their life sometimes wants to be alone. I think that’s one of the major rights.” The story really only begins with Act 504, but Crip Camp teaches students to fight for the full extent of their rights, the way Sabatello describes.

 So, Sabatello’s understanding of legal rights and group rights, together, helps encapsulate Disability in Action’s goals and expectations for the implementation of Act 504. And although the world has come a long way from the incomprehensible atrocity of the institution-era, you may still be tempted to avoid showcasing this film to your classroom because of its graphic depictions of abuse in institutions like Willowbrook—I urge you not to. Though uncomfortable for students, that scene provides additional understanding of the stakes of this fight for civil rights by the disabled in America. It was not very long ago.

Of the above reasoning, might I add—aren’t these EXACTLY the kinds of topics you’d want to use to stimulate class discussion? What does Social Studies in American classrooms concern at its heart, if not the rights and freedoms of the country? As the famous clause “all men are created equal” has taken nearly 250 years to prove effected, much of that catch-up is contained already in your Social Studies curricula—and here is one more opportunity for learning. The relevance in humanities classrooms is abundant, across the board, but this is magnified by the under-evaluation of the disabled position in history as a minority group. As Corbett O’Toole said in Crip Camp, “There are moments when history shifts”. This film is an artful reliving of one of the most important ones of the last century. I hope that your Social Studies curriculum this year does not overlook a highly educational piece of American literature which could be supplemental to your classroom’s emergent concept of rights and freedoms.

Sincerely, 

Clover

A Future High-School Teacher

Clover’s Major Project Proposal for ENG401

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“Text to Speech: An Annotated Selection of Autistic Poetry”

My aim for this project is to explore the poetic work of autistic poets, synthesize and catalogue their texts by larger themes and concepts, and provide some biography for each author in the context of my selections. I will include my own bookbinding, illustrations and print for the final anthology, though it may be published digitally as well. I will also include a foreword/afterword in which I break down some of the larger literary themes (e.g. the inner world, communication, etc.) I have observed in autistic poetry, explain why I chose each poem as representative of its category, and perhaps tie back to some of our earlier readings on disability studies. The current title I chose because one of my largest themes thus far in researching autistic poetry is ‘translation’, but that may change.

2) Central Question 

What are the rhetorical and literary parameters of an “autistic” genre of poetry? What themes occur often? What are the common style elements (e.g.  free verse, first person), and where is most poetry being produced (at an academic or personal level)? What effect does this have on the literature, and why is that important? I’ll also be looking for the rhetorical boundaries of autistic poetry that I’ve noticed in my research.

3) Product Design

Product: A hand-bound, hand-curated and illustrated annotated anthology of autistic poetry.

Design: Poems will be categorized into sections by observed thematic elements, ranked by frequency (perhaps this could manifest as section headers, i.e. ‘Communication’). Each section will have an introduction with the results of my research in it. Each poem will have an artwork to the left of it, and a rhetorical analysis and biography on the back of the right page where it sits. All my images will be drawn without reference from the imagery of the poem I am working on. This will be a variety of media; fabric arts, collage, painting, etc. So, the final product will be very multimedia. I plan to do between 20-50 poems.

4) Production Plan

How will you go about creating this product? What are the steps you have in mind? The big dates to keep in mind:

  • From November 1st to November 8th, I will be gathering poems, observing trends, categorizing poetry I find and making my selections for the anthology.
  • I’ll share what I find with Andrew so he can give me some pointers during conferencing between November 8th and 19th, and in this time I will begin to bind my blank book and afterwards I will begin to block sections and draft thumbnails of my art ideas for each poem.
  • Between November 19th and 29th, I will be drawing, painting, printing, etc. I will show Andrew my biographies, artwork, and analyses to see what he thinks. I’m a poetry student so this is very familiar to me by now, though; I’m mostly looking to streamline and do my final curations of the project’s material.
  • From December 1st through 8th, I will finish my introduction, conclusion, and section headers to paste in the book.
  • I will present the product before December 8th.

5) Consultation

  • I would prefer to meet with Andrew early on in the process, around November 5th or so, so I can get his opinion on my identification of genre parameters, and what I’m observing across gross categories.
  • I would also like to meet with Andrew midway through, for some help with rhetorical analysis of the poetry and including relevant biographical detail. Perhaps I can give some details of my introductory and concluding portions here to make sure that I’m staying on track.
  • Besides that, I feel as prepared as I could be at this point!

6) Citations

  1. https://the-art-of-autism.com/the-art-of-autisms-third-annual-art-poems-for-peace-initiative/ 

“The Art of Autism”’s annual Poems for Peace, a selection of art and poetry by autistic youth and adults. This is an excellent source to draw from.

  1. https://www.autism.org.uk/advice-and-guidance/the-spectrum/poems

The “National Autistic Society”’s autstic poets’ digital library. Again, very impressive library, most of what I need to begin my search is here.

  1. https://www.goodreads.com/en/book/show/44776034-stim

The GoodReads page for Lizzie-Huxley Jones’ Stim: An Autism Anthology, which I have ordered. Not sure exactly what will be in the book, but it can’t hurt.

“He Insists He Doesn’t Want to Kill Me”: Assisted Suicide, Disability Rights, Peter Singer and Harriet McBryde Johnson

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Summary:

“Unspeakable Conversations”, the first chapter of Disability Visibility, concerns the correspondences of its author (and attorney) Harriet McBryde Johnson and Australian philosopher Peter Singer. Over the course of the chapter, the two professionally debate ethics in infanticide, how truly “bad off” (page 21) someone with a disability can really be, and whether that ultimately puts their right to live in the balance through assisted suicide programs. Their debate began in 2001 at Charleston during Singer’s lecture “Rethinking Life and Death” (page 25), where Harriet represented a disability rights organization called Not Dead Yet, and challenged his views. The unofficial debate continued over email until their next meeting at Princeton in 2002, where Singer presented his lecture once more, arguing for a ‘humane’ infanticide of those who would be deemed a burden on society to let live, claiming that such individuals are not actually ‘people’ at all. Johnson writes on page 21 that according to Singer, qualifying as a person requires “Awareness of your own existence in time. The capacity to harbor preferences as to the future, including the preference for continuing to live.” How are such preferences even measured; how is this awareness detected? Unknown so far to science. Not to mention that millions of sentient people (for example those in a coma, nonverbal autistic people, or those with locked-in syndrome), would lose their right to life. This would, at birth, include the author, who could not speak for herself if an institution deemed it just to put an end to what they might see as a societal liability, as if some abled version of herself could exist as a theoretical alternative. As if she is incapable of a happy life from birth. And how are those left to live disabled lives supposed to feel? That they should not exist, that their joy is a glitch in a life that otherwise is just “bad off”? No.

Quote Bank:

“In the lecture hall that afternoon, Singer lays it all out. The ‘illogic’ of allowing abortion but not infanticide, of allowing withdrawal of life support but not active killing. Applying the basic assumptions of preference utilitarianism, he spins out his bone-chilling argument for letting parents kill disabled babies and replace them with nondisabled babies who have a greater chance at happiness. It is all about allowing as many individuals as possible to fulfill as many of their preferences as possible.” – Page 27

“Yes, I am shaking, furious, enraged—but it’s for the big room, two hundred of my fellow Charlestonians who have listened with polite interest, when in decency they should have run him out of town on a rail.” – Page 28

“I’m engaged for a day of discussion, not a picket line. It is not in my power to marginalize Singer at Princeton; nothing would be accomplished by displays of personal disrespect.” – Page 31

Reflection:

I greatly enjoyed the way that Johnson brought bold professionalism to a tired debate, and recentered the marginalized voices that Singer’s rhetoric directly insults and harms. To the reader, please take my reading of this chapter with a grain of salt, because I admire Johnson’s cause, and stand by her efforts to disrupt dominant ableist rhetoric at the heart of where it lives (academic institutions being one of these spaces). 

What I dislike is Johnson’s seeming gratification in confronting Peter Singer. She appears somewhat pressed to “win”, and while I understand she is essentially arguing for her right to exist, I feel that her agenda in doing so precedes her thinking somewhat. Take for example this quote from page 36: “Singer joins the discussion until he elicits a comment from me that he can characterize as racist. He scores a point, but that’s all right. I’ve never claimed to be free of prejudice, just struggling with it.” I completely understand that erasing prejudice is a process, but the issue with making racially offensive comments is not that they ‘score points’ for the opposing side of a tangentially related argument. So, I think an additional sentence of reflection from the author is needed here, at least. Some instance of connection between Singer’s misunderstanding of disability and her alleged mischaracterization that could humanize the discussion a little. Obviously, if Singer doesn’t understand how a child with a mobility impairment might have fun at the beach, he needs some education! That said it all for me. And while yes, it’s a problem that he takes up media space with his rhetoric, maybe he shouldn’t be referred to as “the Evil One” (page 26) in public print; it just seems immature and delegitimizes professional discussion. I saw similar disregard in the following quote from page 40: “when a student asks me a question […] The words are all familiar, but they’re strung together in a way so meaningless that I can’t even retain them—it’s like a long sentence in Tagalog.” So, Tagalog is analogous to meaningless? I found this to be an extremely poor choice of language. I live with a Vietnamese speaker, and it’s not uncommon that my family members will mock his conversations with his mom as gibberish, so to me the Tagalog comment was honestly trashy.

One other example of this behavior that I find problematic and somewhat ironic is on page 27, as Johnson writes: “As an atheist, I object to [Singer] using religious terms (‘the doctrine of the sanctity of human life’) to characterize his critics”, already demonstrating an intolerance for religious beliefs on page 25 “In fact, no god put anyone anywhere for any reason, if you want to know”, but simultaneously bemoaning the fact that “they don’t want to know. They think they know everything there is to know, just by looking at me. That’s how stereotypes work. They don’t know that they’re confused[…]” later on that same page. I wish that Johnson would be as compassionate towards others’ ‘struggle’ against prejudice as she is to herself, because I found her absolute assertion that God is not real, next to a call for open-mindedness, to be hypocritical. And I’m an atheist, too. But I admire more than anything her bold stand for the recognition of damaging and dominant cultural rhetoric, and found the chapter to be well-paced and impactful.

Interplay: Or My Evolving Understandings of Dependency, Access, and Accommodation in the Context of ENG 401 and Disability Studies.

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A) My current understanding of disability studies: The completion of this Composite Essay has brought me to consider what I know at this time about disability studies, based on my three weeks as a student in ENG 401. This far into our course, I understand disability studies to be the academic interpretation of disability, especially in play with society, beginning with the principle that disability exists as a social construct and not a physical condition. A disability may stem from various physical or mental impairments, but those do not inherently make someone disabled. So, disability studies would strive as a cause to re-educate the public through disability awareness, and establish more equitable systems in society for those who are disabled.  Personally, I subscribe to the social model of disability, which proposes that disability arises from social barriers as opposed to physical impairments. I resonated with the model after reading the chapter “Reassigning Meaning” by Simi Linton from Claiming Disability, one of our Week One assigned texts. Something I find particularly relevant to my understanding of disability studies from this chapter is the way Linton regards disability terminologies, which she claims “have been used to arrange people in ways that are socially and economically convenient to the society” (Linton 9-10), and this precedes even their definitions. In my experience, becoming aware that American society is not inherently designed to accommodate disability, at first, carries a charge of blame to it, but it’s hard to pinpoint exactly where or to whom. While perhaps our lawmakers have work yet to do, I think Linton’s observations illustrate an important point; that disabled people are a minority, and that societies unfortunately trend towards expediency to accommodate the largest number of people with the least resources. So, the minority status of disability is central. I think this helps to get at the definition of disability studies, too, because much of the focus of disability studies is in identifying gaps in accessibility, which helps institutions to avoid oppressing the disabled and lowering their quality of life. On page 12, Linton writes that “a premise of most of the literature in disability studies is that disability is best understood as a marker of identity”, and I like to extend this to disability studies as well, which approaches disability as a highly integrated facet of the self as part of the whole bodymind. So, disability studies, in short, is a sociocultural understanding of disability as a construct, with an emphasis on equity and inclusion and in resistance to the classic, medicalized understanding of disability. Or that’s what I know of the topic so far in this course.

B) What I would like to see more of as the quarter continues: Our class had a discussion last week on what topics we would like to pivot towards as the quarter drags on, and I maintain interest in disability and masking, workplace discrimination, and crip theory. As well, I would appreciate further instruction in rhetoric, because I felt my writing skills get stronger almost immediately after reading the Grant-Davie text. Having the language to articulate someone else’s argument in abstraction from the text has been a massive insight for me. I know that the rhetoric is secondary to the disability studies focus of the course, but it has been what’s stuck with me the most so far. Of course, the three topics below are also things I would like to revisit further into the quarter.

C) Three concepts with significance to me thus far: For the third part of this composite piece, I’ve selected three topics that have been on my mind, and in my journal, recurrently this quarter. I’m going to discuss dependency, access, and accommodation, because I think these topics are similar in a lot of ways, but distinct, and they identify some of the social ‘rubs’ of disability. The topics are highly interconnected in the adult sphere of disabled life: for example, graditations of dependence requiring improved accessibility and accommodation to manage, improving access helping to manage dependency, and accommodations which improve access in society. Social opinion is heavily enforced by these topics, which are often subject to public scrutiny, as there’s usually a democratic process to expanding access/accommodation using public funds. I am interested in the way each topic feeds into the next, and with my interest in theory, have been priority topics for me thus far in the course.

Concept one: Dependency

I’ll start with dependency, which I view as one part of disability that society is not capable of ignoring, and has an obligation not to dismiss. Unfortunately, the responsibilities of providing economic support, additional needed care or technology to those who would require them has poisoned society’s understanding of dependence as anything other than a social problem. Eva Feder Kettay, who authored the chapter “Dependency” from Keywords for Disability Studies, wrote that many scholars of disability acknowledge, contrary to this, that “what undermines the ability of disabled people to flourish is the view that being self-sufficient, self-reliant, and self determining is the norm, and the only desirable state of persons in a liberal society” (Kettay 54). Dependency isn’t a lack of independence; rather a state of recurrent need for assistance in some way. Viewing those who are dependent as a sunk cost invites the incorrect assertions that teaching independence “ultimately saves public expenditures because the provisions sought are less costly” (Kettay 57). Dependency is a relationship which can be managed, and managing dependency allows those needing care to “select and optimize the opportunities that such acknowledgment makes possible”, growing synergistically with those involved in their care to where both parties feel respected and understood (Kettay 58). I wanted to address dependency first because dependency seems to be the line at which society takes issue with disability. As well, society’s understandings of both access and accommodation are both intimately informed by understandings of dependency, and what dependency looks like, and what it allegedly costs to the public.

Concept two: Access

Second to dependency, I believe the concept of access is a helpful foil, and is a topic that has dominated our class discussions this quarter, so is worthy of notice. Chapter three of Keywords for Disability Studies, by Bess Williamson, is all about access. Williamson defines it access in a few ways: as “ the ability to enter into, move about within, and operate the facilities of a site, and is associated with architectural features and technologies, including wheelchair ramps, widened toilet stalls, lever-shaped door-handles, Braille lettering, and closed-caption video”, but also acknowledges the figurative aspect of access, the “set of meanings linked to a more inclusive society with greater opportunities for social and political participation” (Williamson 14). The type of access I had considered over the quarter so far would be access in society; to jobs, resources, experiences, states; so, the first kind Williamson mentions. It’s this kind of access that the disabled are not privy to in whatever regard which sets the field of ableist privilege in society. I agree with Williamson that besides representing a type of social liberty, access and accessibility convey “arguments about rights and opportunities” (Williamson 15). Access is in this way a positive skew on the elimination of opportunities, but must not mandate “overcoming the reality of barriers” (Williamson 17). Access is not achievability, but availability. It’s through examining access that accommodation can be taken, anyhow.

Concept three: Accommodation

As mentioned twice above, I view accommodation is the praxis of access. I would have said walking into this class that accommodation was a goal of disability advocates outright, but today I would say that it is part of a customization process that some disabled people elect for and pursue to achieve better social inclusion. I was surprised that Keywords for Disability Studies’ chapter on accomodation, by Elizabeth F. Emens, only really acknowledges accomodation in institutional terms. Although the term first “gained prominence as a keyword in disability politics and theory through legal discourse” (Emens 18), it has since gone on to describe the set of manipulable parameters an institution can customize to better suit the needs of an employee, student, customer, client, etc. therein. As something that exists between institution and individual, accommodation is an intensely litigated topic, and Emens believes that to some scholars it will “always be too limited a model”,  because it’s “grounded in antidiscrimination principles” from its origins in the courthouse (Emens 20). I think that accommodation is central to disability studies because it exists in the liminal space between exclusion and inclusion, so when accommodations are available there is an additional responsibility that they must be freely and readily given. Part of my own frustration with the institutions who helped to manage my disability when I was young were the inconsistencies in delivering accommodations. To our class, the topic of accommodation is treated almost as an option to rectify the exclusion of societies which are ableist by design, and has so been a third and final focus of mine this quarter.

Conclusions:

I chose to discuss dependency, access, and accommodation because of how connected they are to each other, and to public conceptions of disability in society, one concern of disability studies. As the quarter progresses, I do expect my understanding of these topics to change, and something I would be interested in is revising this essay at the end of the quarter and measuring my academic growth on these topics. I’m grateful for the chance to be in class every day, growing my understanding, and I hope my empathy, but I am by no means a definitive authority on any of these topics. 

Works cited:

Linton, Simi. (1998). Claiming Disability: Knowledge and Identity. “Reassigning Meaning” pp. 8-17. New York University Press.


Adams, R., Serlin, D., & Serlin, D. (2015). Keywords for Disability Studies (Keywords). Chapters by: Emens, Elizabeth F., Kettay, Eva F., Williamson, Bess. “Accomodation”. “Dependency”. “Access”. New York: NYU Press.

Being, Becoming, Doing, Connecting: A Review of “Disability Visibility”

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Disability Visibility: First-Person Stories from the Twenty-First Century may be over 300 pages, but is among the faster-paced books you will read this year. Opening with an introduction by the collection’s editor Alice Wong, Disability Visibility features the writing of 34 artists, scientists, devout worshippers, authors, critics—sharing their insights on disabled life, activism, and community. Each chapter falls between two and ten pages of light autobiographical prose, and although each is unique in its own aspect, the variety of perspectives come together as a vibrant mural to prove that disabled never equals defective, and that wellness is both personal and relative.

Examining the four subheadings of the text— Being, Becoming, Doing, and Connecting— gives a fuller picture of the aim of Disability Visibility, a narrative documentation of each author’s journey from invisibility to proud self-embodiment. Each writer begins from the circumstances of their life, and choose a true personal story which best illustrates the complex intersections of their disability to their social life, relationships, employment, and aspects of identity (sex, gender, orientation, race, class, etc.). The way that the world reacts to disability is centralized among these, because issues of accessibility begin with the design of our society. Reyma McCoy McDeid, an autistic treasurer and author, shares on page 220 (a chapter entitled “Lost Cause”) that once she disclosed her neurodivergence at the disability advocacy center where she worked, the atmosphere changed drastically. “My coworkers, all passionate about serving people with disabilities, did not appreciate having a disabled coworker.” She was repeatedly discouraged from running for office after disclosing her neurodivergence at work, but this did not stop her.

So, it’s not just stigma and self-confidence; ableist rhetoric leeches into the public mind and informs our definitions of health, beauty, and even life itself. These perceptions can be positively and negatively biased, but almost always come from a place of assuming nondisability in society. Ariel Henley, the author of “There’s a Mathematical Equation That Proves I’m Ugly—Or So I Learned in My Seventh-Grade Art Class”, provides an unusual example: using the Golden Ratio to determine objective beauty on a ten-point scale. She writes on page 61 that “Never had an individual been ranked a perfect ten, but still we lived in a society that found the need to measure and rate and rank and score.” These measurements of the face and body belie measurements of self-worth, incredibly damaging for a young disabled girl who already feels too noticeable. On the converse, though equally bizarre, page 24 of Disability Visibility’s first chapter, “Unspeakable Conversations” by Harriet Mcbryde Johnson, describes the way that positive biases can be equally confusing and degrading. “There is also the bizarre fact that, where I live, Charleston, South Carolina, some people call me Good Luck Lady: they consider it propitious to cross my path when a hurricane is coming and to kiss my head just before voting day.” Can you imagine being kissed by a stranger on the street, and being told that the assault counts as a favor towards their preferred candidate? This is the power of Disability Visibility; it puts you in someone else’s shoes, and for a few pages, you experience life in tandem with the speaker. The benefits in perspective are enormous. 

So, this book is for you if disability is present in your life, and this book is for you especially if it is not. The great advantage of Disability Visibility: First-Person Stories from the Twenty-First Century is that it is an ethnography which reads like a diary. In other words, this book is for graduate-level reference, and this book is for high school libraries. It’s not necessarily scientific, and the writing style rarely strays from personal narrative, but this holds a power of its own because each piece has its own voice. In short, if you’ve ever wondered how to discuss, describe, and include disability in your conversations with compassion, please read this book.

“Unbroken: Alice Sheppard’s Revelations in Dance”

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Title and Author: “So. Not. Broken” by Alice Sheppard, from Disability Visibility

Objective Summary: 

Alice Sheppard begins her short autobiographical piece “So. Not. Broken” from Disability Visibility by sharing a joke with her physical therapist as she arrives at an appointment. “I’m broken”, she says, but it has nothing to do with her disability (182). As a choreographer and dancer, Alice is used to living with a degree of physical brokenness, but not in the way her nondisabled audiences may immediately assume. “Many nondisabled people attribute a degree of brokenness to disability”, she writes, adding “it arises from the medicalization of our bodyminds” (182). For Alice, learning how to dance involved figuring out her body through the mechanics of her crutches, and her chair, as well as without them, leading her to new capabilities in performance. To Alice, the chair is a part of her body, because it becomes part of her embodied space, in dance and in daily life. She shares that her perspectives in dance were not just those of a disabled person; but also of a woman, and of a black woman; and she believes all of these intersections of identity impact embodied experiences in real ways. The “expressive capacity of bodies”, Alice writes, is surely enhanced by a variety of embodied forms, and she admits her new approach to the body as a whole gives her hope for a bright career future.

Quotations: 

  1. “My very first problem as a dancer was figuring out my chair. I had to learn how to move in it, of course, but I also had to understand what it meant as a black woman to use a chair onstage, in the studio, and in the world”. (page 183)
  1. “When I discovered the concept of embodiment—a word I use to describe the way in which my body takes shape and form—I made another breakthrough: My chair is my body.” (page 183)
  1. “My crutches and chair are not tools that compensate for my impairment. Nor are they simply devices that I use for traveling across the studio. I understand these starting points as embodiments, each of which has different movement possibilities.” (pages 183-184)

Takeaways and Reflection:

Clearly, Alice is speaking as someone with lived experience in multiple marginalized identities, and she centralizes the way those intersect in her life through her dance and stage performance career. The narrative does meander a little to fill in the details of her personal life, but one main claim she makes is that although brokenness and disability are affiliated through the medicalization of the American bodymind, this is both a harmful and inaccurate connotation which should be abandoned. It’s evident through Alice’s experience as a choreographer that mobility assistance devices are also a part of embodied selves, and can absolutely participate in the dance. In fact, she proposes that these devices can even expand the creative experience of dancers once integrated into routines. Alice’s narrative of her journey towards a greater self-understanding could be useful to many disabled and nondisabled in her audience, especially to those that might feel drawn towards athletic pursuits. At the end of the day, everyone must accept their body as it comes, because looking at the self as a lesser version of another person just seeds feelings of inadequacy and self-loathing.

“An Unshamed Claim to Beauty in the Face of Invisibility”

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“Sins Invalid”, while the name of the documentary that ENG 401 viewed in class last Friday, is also the name of the disability justice visual-and-performing-arts troupe starring in that film. Based in the Bay Area of San Francisco, Sins Invalid is experienced similarly to an onstage lookbook: it is a performance that explores beauty, desire, the body, and identity through disability, paying careful respect to the intersectional lines of race, gender, sexuality, and class. Over the 33 minutes of the film artists Cara Page, Seeley Quest, Maria Palacios, Nomy Lamm, ET Russian, Antoine Hunter, Leah Lakshmi Piepzna-Samarasinha, Rodney Bell and Mat Fraser are interviewed about their performance and the motivations behind their various creative expressions on stage. Since 2006, the group have performed on a rotating basis, and are allowed to choose their own acts. A single performance offers everything from slam poetry to aerial gymnastics, all with a focus on the beauty in self-realization among the disabled, and letting go of the ableist myth that our fullest lives and disability are mutually exclusive things.

Chapter two on “Ability” from Keywords for Disability Studies, by Fiona Kumari Campbell, posits that ableism “is useful for thinking not just about disability but also about other forms of difference that result in marginality or disadvantage” (Adams et al. 14). Sins invalid, which is run entirely by disabled people of color, makes this a focus of their work within the disability facet of the performance. Seeley Quest’s performance as “Carrie”, a pregnant foster youth, exemplifies these “forms of difference”, and demonstrates the avenues by which disabled people are too often taken advantage of (financially and sexually in Carrie’s case) when they are not adequately accommodated by the systems in which they must live.

The next chapter of Keywords for Disability Studies, “Access”, by Bess Williamson, adds that our modern pressures to accommodate the disabled “[follow] the logic of the ‘social model’ of disability, which shifts attention from the impaired body to the surrounding environment” (Adams et al. 15). Williamson means here that the social model of disability sees disability as defined by society, not the way someone is born. This reminded me most of the performance of Mat Fraser, who spars with an imaginary foe onstage as audio clips of derisive comments play in the background. As the comments continue, Mat falls and convulses on the ground, unable to get up, with blood streaming from his mouth. I believe at this moment Mat intended to show how the impairments of stigma, judgement, and low self-esteem themselves become a barrier, perhaps equal to or sometimes greater than the physical challenge presented by a given disability.

Personally, I enjoyed the film for its intimacy in subject, because to me it proved another level of sincerity and frankness in a discussion on bodies. How can that not include love, sex, and romance? However, I also noticed the uneasiness in the class when the nude bodies came on screen. In this country, it’s more acceptable to show a video of a shootout than a female nipple in most circumstances, so I understand their reservations. But, I think that awkward feeling is partially intentional on the behalf of Sins Invalid, as it makes us consider what should be normalized (like the scene where Mat washes himself onstage) for the human body in society, and also reconsider what bodies we do see onstage most frequently and why.

I would rate this documentary four stars because I thought it was a bit poorly produced for a documentary about a performing arts crew (you’d think they’d have better cameras in 2013), but the amount of time spent interviewing the actual artists and not the company was refreshing to me. Aesthetically, and in terms of the message, absolutely a five star film. If nothing else, Sins Invalid is a beautiful performance, and I think the artists important work bringing justice to all “forms of difference” at a degree of inclusivity that felt new to me as a consumer.

Reflective Annotated Bibliography Two: O’Toole and Lewis (Chapter 14, “Crip”)

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Summary:

 In Chapter 14 of O’Toole’s Keywords for Disability, Victoria Ann Lewis describes the loaded history of the word “crip”, and the way that crip genres of identity have been expanded upon since the 1980s. Once a slur used as a diminutive of difficulty (i.e. “crip course” (46)), the term “crip” has adopted an ironic affection, and is now most recognized by academics among other terms that reclaim the stigma of disability. 

Since then, the term has exploded throughout disability discourse: from “crip it” (47), to “crip zen” (46). “Cripping”, like “queering”, is now considered an effective means of demonstrating “dominant assumptions and exclusionary effects” (47) when applied to media. The two are repeatedly referred to in tandem throughout Chapter 14.

In conclusion, “crip”, sometimes written as “krip” to distinguish from the infamous gang, is showing no signs of slowing down, and goes to show how the allowance for self-definition can be generative of new forms of expression within, and beyond, the community.

Quotations: 

1) “With the emergence of the disability civil rights movement in the 1970 s, ‘crip’ gained wide usage as an informal, affectionately ironic, and provocative identification among people with disabilities.” (46)

2) “While there are examples of ‘crip’ converted into a verb as far back as the fourteenth century, where we read of ‘a beeste that was broken and Cripped ,’ our contemporary usage seems to have originated in academic discourse as a critical strategy borrowed from queer studies.” (47)

3) Sandahl also notes the two positions [queerness and cripness] share ‘a radical stance towards concepts of normalcy’, a position that McRuer describes as a shared ‘resistance to cultural homogenization’”. (47)

Reflections:

Lewis’ text, though brief, paints a bright future for the use of “crip” as a type of strategic language. I will say, in case my personal experience is not sufficient, that I think it’s wonderful that verbiage can inspire such feelings of community, ownership, and empowerment when they once inflicted pain. Affectionate terms are a great way to increase comfort, and promote self-confidence. Lewis’ paper also underscores the intersectional lines between queer and crip theory, which is equally fascinating, and I think exploring that shared history would make for a great essay. However, I would not personally advocate for the use of this term, because in my own experience I’ve seen it used mainly as a pejorative.

Reflective Annotated Bibliography: “Reassigning Meaning”

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Title and Author(s):

Simi Linton, “Reassigning Meaning”, second chapter of Claiming Disability.

Summary:

In this reading, Linton provides a theoretical framework that re-centers disability within the discussion on health and society, while considering other intersectional factors of race, gender, and sexual orientation as belonging on an axis with points of privilege. First, Linton introduces the audience to many of the terms typically used to discuss disability⁠—ableism, special, abnormality, overcome, person with disability⁠—going as far as to deconstruct that dis- into its “semantic consequences” (31) of diminutive separation. Through naming oppressive language (i.e. “dying of AIDS”), describing the conflict (the implication that those with AIDS are incapable of living active lives), and providing a helpful alternative (i.e. “living with AIDS”), Linton demystifies the myriad of options for describing disability, recommending the terms disabled and nondisabled among them (27). At the center of Linton’s framework is the idea that the nondisabled position is not the “universal, neutral position from which disabled people deviate” (32), but simply possible outcomes of human variation.

Quotations: 

“This new language conveys different meanings, and, significantly, the shifts serve as metacommunications about the social, political, intellectual, and ideological transformations that have taken place” (9).

“When disabled people are able to pass for nondisabled, and do, the emotional toll it takes is enormous” (20).

“Saying that someone is suffering from a condition implies that there is a perpetual state of suffering, uninterrupted by pleasurable moments or satisfactions. Afflicted carries similar presumptions” (26).

Reflections:

More than anything else from this text, I am grateful to have a layman’s-terms toolkit for discussing disability as the quarter draws on. There is so much power in language, and as Linton points out, language itself is a driver and a shaper of conversation. Knowing exactly why certain colloquial terms have been intentionally abandoned by disability advocates, and which alternatives are preferable, makes me more comfortable in charting the waters ahead.

However, I was pretty confused by some of the language in this reading, specifically about nondisabled perspectives. Linton wrote “The nondisabled stance, like the white stance, is veiled” on page fourteen. What exactly does this mean? That the “nondisabled stance” is an undertheorized stance? What is a “white stance”, anyhow? At first, some of Linton’s phrasing might seem inflammatory, but that in itself helped me to generate thought as I worked to dispute whatever I disagreed with at first. Another example: Linton described the nondisabled on page 32 as “a category of people whose power and cultural capital keep them at the center”. This ordering of words makes it seem as though the nondisabled could wield this “power” as a tool to force their way into higher positions in society. However, I believe what Linton means to say is that the absence of ableist oppression among the nondisabled—whether that may be incurred medical bills, workplace discrimination, an increased difficulty in accessing resources, or imposed stigma—allow the nondisabled to come to the “center” of the discussion on disability, through the osmotic pressures of privilege in society. 

It’s clear from this reading that Linton is as deeply critical of the linguistic structures enforcing ableism as our popular slang, which to me is refreshing, as it adds a layer of depth. Linton argues that only through the use of humanizing, accurate, and warranted language towards disability may academic discussions on ability and society be facilitated respectfully and appropriately. Personally, I couldn’t agree more.