Author: unsureunderwaterobot

Disability Visibility: Action of Humanness

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“Contribution, innovation, relation, condition, completion, devotion, identification, regret, burden, belief, wrong, right, rebuild, beautiful, embodied”, all words used to describe Disability Visibility. Disability Visibility is a compilation of “first-person stories from the twenty-first century” written about disabled folks, by disabled folks. This mosaic of anecdotes was pieced together by Alice Wong. Each story differs greatly. Authors explain their individual experiences of being disabled in a world built without them in mind. Despite each story being personal to the author, the overarching theme of the book remains consistent. From narratives about navigating medication as a woman with bipolar disorder, to stories about the shame casted on a young, Black girl growing up in a religious household, Disability Visibility amplifies the voices of folks silenced in our world.  

Disability Visibility is written for a wide audience of folks both disabled and not. It acts as a learning outlet for nondisabled people to hear stories told by people living with disabilities first-hand. It gives disabled people an opportunity to tell their stories and exist in communion with one another. A concept explained in the story The Beauty of Spaces Created for and by Disabled People is crip space; “Crip space is unique, a place where disability is celebrated and embraced—something radical and taboo in many parts of the world and sometimes even for people in those spaces” (smith pg. 273). Disability Visibility is a crip space, of sorts. It is a space where disabled folks can express themselves without the ableist pressures of our society.  

Each story grapples with the idea of disability, for example, from Incontinence is a Public Health Issue—and we Need to Talk About It, “I didn’t feel disabled, as it were” (Ramsawakh pg. 175). Or from When You are Waiting to be Healed, “I was learning to navigate the world as a young Black woman, and I did not feel I had the right to claim a disability” (Eric-Udorie pg. 56). Both stories have unique plots, characters, settings, and emotions, but themes remain the same throughout. The entire book carries parallel agencies. The most prevalent is to share the non-fetishized, pity-free stories of disabled people.  

Alice Wong compiled these essays and short stories as individual accounts that created a sense of communion. Jamison Hill’s chapter, Love Means Never Having to Say… Anything, discusses their partnership with a woman named Shannon. Both Shannon and Jamison are disabled by the same illness (although it has manifested differently in their bodies). Jamison writes about how transcendent disabled love is and how having a disabled lover has been incredible. They write, “…but Shannon and I take care of each other in ways I never thought possible” (Hill pg. 265). This story portrays the larger concept of Disability Visibility. The disabled community can take care, despite the world not reciprocating. The story, and book as a whole shows the disabled community in action. The story avoids inspiration porn and pity; but rather, it resembles compassion, togetherness, and humanness.  

Falling/Burning

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Falling/Burning // Shoshana Kessock Summary:

The chapter I read was written by an author with bipolar disorder. They walk the reader through the complexities of the medical system as a creative with a mental disability. The chapter is an anecdotal narrative about their life, starting from a younger age, flying and falling and soaring and burning through the days. They share their experience with therapists, then psychiatrists, medication, then lack thereof. They sought out information about their disorder and were misinformed, under-informed, and poorly guided. The crux of the chapter is when the author explains their devastating ten year season from 2002-2012, which was ultimately “resolved” thanks to proper information and cautiously prescribed medicine.

A few quotes from the ten year period:

“Everything here is… hard, and bright, and violent. Everything I feel, everything I touch… this is hell. Just getting through the next moment, and the one after that”

“That was the illness talking”

Summary of Rhetorical Situations and Their Constituents // Keith Grant-Davie:

Keith Grant-Davie outlines what makes up a rhetorical situation in their essay, Rhetorical Situations and Their Constituents. They begins by elaborating on the wholeness of a rhetorical situation, then breaks down that wholeness into exigence, rhetor, audience, and constraints. Exigence, as defined is, “an imperfection marked by urgency. It is a defect, an obstacle, something waiting to be done, a thing which is other than it should be”. Exigence exists in a multiplicity. It begs to ask the questions: what is the discourse? Why does it exist? What should it accomplish? Rhetors are not as simple as one would think. Some may be unidentifiable and are complex and multifaceted by nature. Audience, similarly, to rhetors, could be anyone. Anyone that could potentially be the audience, is. The role of the audience is persuaded by the rhetor and discourse, but at the end of the day, it’s still a conversation and the audience is a prevalent part of the rhetorical situation. Constraints are, “persons, events, objects, and relations which are parts of the situation because they have the power to constrain decision and action needed to modify the exigence.” Constraints are preset circumstances/models that a rhetor and audience are held to.

“…where the aim is not victory over the opponent but a state of identification, where writer and reader are able to meet in the audience identity the writer has created within the discourse” 

In Reflection of both readings:

I found this chapter to be a accurate testimony to how mentally disabled folks navigate through life, in relation to creativity, medication, school, motivation, and frustration. It’s a tale so personal to this author, but true for many others. Through the scope of a “rhetorical situation”, the rhetors Shoshana Kessock, Alice Wong, and potentially others I am unaware of (are unspoken), are constrained by the length of a chapter, the english language, the obstacles of presenting a story as a disabled person, and the audience‘s knowledge regarding bipolar. I believe the audience extends much further than myself. The rhetorical choices made by the author lead me to believe that they hope struggling disabled authors to read their story. They persuade inspiration and hopefulness.

Crip Spaces: Sexual, Fulfilling, And Revolutionary

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Summary of Sins Invalid

Sins Invalid is a short documentary about a performance team of artists portraying their understanding of sex and disability – as disabled, sexual beings. The team is made up of an entirely disabled cast and crew. Throughout the documentary we see live performances as well as interviews of the crew members. Performances range from dance routines and singing, to poems and short plays. We get to know a bit about the crew and their experience navigating sex as a disabled person in a world that dismisses or fetishizes sex. The documentary celebrates queer, disabled and identities of color through an artistic lens. 

Quotes:

“This is precisely why they (Crip Spaces) are needed: as long as claiming our own ground is treated as an act of hostility, we need our ground” (Smith pg. 274)

This quote ties in well with Sins Invalid and the need for performances like theirs. There are countless sexually-charged shows, but how many include disabled bodies? How many are accessible for disabled patrons? The organization provides an opportunity for the performers and viewers to feel safe, seen, and validated. Not only that, but Sins Invalid provides a space that disabled folks can actually show up to. The moment from the film I am drawn to is at the very beginning when the audio describer/host(?) is explaining who Sins Invalid is and what they stand for. The disabled voice of color celebrates disability and praises the sexual queerness of people. 

“…we might conclude that it (the way disability and sex is misconstrued) is because sexuality is always a site of deep-seated anxieties about normative forms of embodied being” (Shildrick pg. 165)

This quote speaks in tangent with our class conversation about feeling uncomfortable. Sex is not for everyone. Additionally, not everyone has a positive relationship with sex due to lived experience. It is not a good or essential aspect of many lives, however, I will challenge the discomfort for those who come from a cultural/religious place of taboo and anxiety. If sex is taboo for “normalized” bodies, how are we digesting sexuality within disabled bodies? How are our discomforts and anxieties being projected on those who society deems “abnormal”? I am brought back to the scene in the film when the woman who uses two prosthetic legs is on stage while a narrator graphically explains a sexual encounter. I don’t believe this performance is intended to be a dichotomy; her disability is not in opposition with her sexual experience, but rather in tangent. Our discomfort may be projected onto her not having legs, when realistically it may come from a place of insecurity and social taboo regarding sexuality.

Reflection:

In reflection of the readings and this film, I feel at ease, but not complacent. I feel hopeful and full of questions.

 I find the concept of “Crip Spaces” absolutely essential, both in my own life, within my identities and for the well-being of humankind. I hope, moving forward to find spaces for myself that embrace my queerness (in all meanings of the word). Likewise, I hope for disabled spaces, Black spaces, Indigenous spaces, spaces of color and tongue, trans spaces, survivor spaces, and beyond. Shameless plug, an online platform that amplifies these folks is SaltyWorld. I would highly recommend checking it out for all identities.

Rating:

My bias leads me toward a 5/5 rating. Despite the documentary being lower budget I believe it was artistically brilliant, socially impactful, and overall well done. 

Margrit Shildrick: Disability and Sex

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Summary:

The author begins by explaining how the world sees sex: a paradox of too much or too little, of joyful or shameful, of scientific or pleasurable, of normal or not. After giving cultural context, they elaborate on how disability and sex are at play. Disabled folks don’t have access to sexual education which only amplifies a negative stigmas both within and outside of the disabled community. They then go on to explain why sex and disability are such a tricky intersection (quote number 2) and how it stems from a cultural anxiety regarding sex and the body. They break down the Deleuzian model and emphasis the importance of navigating desire opposed to embodiment. The author reinvents the widespread understanding of what sex/sexuality is. Lastly, they explain the relation to queer and disability studies in action. The closing of the chapter summarizes the issues of how sex and disability is viewed and where we can advocate going in the future.

Quotes:

“…disabled people, like everyone else, understand their sexualities in multiple different ways, which do not fit easily with the convenient models of social management” (Shildrick pg. 164)
“If those who count themselves as nondisabled have laregly disavowed the conjunction of disability and sexuality, experiencing what can only be regarded as the “yuck factor” when faced with the realities of sexual desire in all their anomalous forms, then we might conclude that it is because sexuality is always a site of deep-seated anxieties about normative forms of embodied being” (Shildrick pg. 165)
“…understandings of disability and sex have encouraged scholars and activists to confront questions of embodiment, and more specifically, the circulation of desire” (Shildrick pg. 165) *so good*
“…the term “queer” goes much further in being explicitly defined as against all forms of normativity” (Shildrick pg. 166)

Reflection:

I loved this chapter (I know that isn’t great analysis, but I just have to start with that). It went well in tangent with some of the queer theory work I’ve been reading. The author emphasized the need to tear down stereotyped preconceptions of sex (both within and outside the disability community). They provided alternative definitions of sex and embodiment, which I see as a powerful tool for advocacy. In addition to explaining the tangible intersections of sex and disability, they dove into the heady complexities of challenging everything we’ve been taught. I also appreciated the type of language the author used; very plain, with lots of examples.

RAB: O’Toole’s Insight on Celebrating Crip Bodyminds

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Celebrating Crip Bodyminds
By: Cobett Joan O’Toole

An objective summary of the reading:

O’Toole begins by summarizing their book, explaining their first-hand experience being disabled, and years of studying disability studies. They give anecdotal evidence of just how complex disability is, through a story about a group of women, unable to commit to the term “disabled”. Then they explain the importance of disabled communities and why disabled circles are so important. O’Toole emphasizes the idea that disability is not a monolith, yet it is a communal experience.

O’Toole explains the terms and labels they use throughout their writing and give the reader a literary ground to stand on. Additionally, they provide cultural context, discussing how nondisabled society has determined what “normal” is and how disabled folks navigate this false ideology. From there, O’Toole dives into the misconceptions nondisabled folks have, emphasizing on the erasure or idealization of disabled people.

Later, O’Toole goes back to the language of disability, both in their own life and an academic setting. They give tools and tricks for identifying people based on their intersectional identities.

3 or more quotations (with page numbers):

The page numbers included are the pages from the dox. document!

“Being disabled is a cultural experience which shares many commonalities, even with others with very different disabilities” (pg. 7)

“Normal” is an artificial construct built upon the white, middle-class, male, nondisabled bodymind” (pg. 10) “Nobody is normal” (pg.12).
“Acknowledging that there is no ‘normal’ doesn’t mean that everyone experiences disability as a political and social identity. Acknowledging that there is no ‘normal’ creates a society where difference can be recognized without being diffused or ignored. It does not take away the culture of disability, only adds an opportunity and awareness for us to be more integrated into society as a whole” (pg. 12)

“What do you call a disabled person?” I don’t know the ‘right’ answer, but may I suggest calling him by his name, Bob? But I digress.” (pg.39)

“Was I going to use the academic language? Was I going to use the language of service professionals? Was I going to use the disabled peoples’ self- and community-identifiers? How should the time (late 20th century) and place (United States, more specifically Berkeley, California) shape the language choices?” (pg.37)

“So while I am widely known as being queer in disability, I was much quieter about being queer when negotiating school services for my disabled daughter. I was no less queer, but the school environment was significantly less friendly to queer parents than to non-queer parents. So I prioritized my daughter’s need for services over my own need to educate them about queer and disabled parents.” (pg. 41) Codeswitching and intersectionality

Thoughts:

Something that stuck with me was the way the author wrote. It was a beautiful combination of rightfully unapologetic and understanding of the readers’ potential ignorance. I was struck by some of the language I didn’t know, as someone who is part of the disabled community. Primarily, I had never heard the term “consumer” for a mental disability. I’m eager to learn more about disability studies and the language used both within and outside of the disabled community. I have always found language to be so important, when identifying people; I value language that leaves a baseline for humanness, while making space for differences to be seen and valued. I included a quote about calling a disabled man “Bob” because that’s his name and I found that so grounding!

Identifiers span cross identities, both chosen and culturally given. I admired how the author explained their experience with intersectionality. In the final quote I included, they explain an instance when they code-switched to protect themselves and their daughter. No human fits into a box, we are all combinations of privilege, lack thereof, and positionality. It is so humanizing to recognize these combinations and have the language for them. Language also leaves space for like-bodyminded folks to feel supported and not alone. #intersectionalityordie

Piss on Pity

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The Kids are Alright is a short documentary breaking down the inappropriate and dehumanizing nature of Jerry Lewis’ Labor Day Telethon for folks with Muscular Dystrophy. Mike Ervin, an ex-poster child for Jerry’s fundraiser, speaks up about being exploited as a source of pity to raise money. The conflict of this film is the mistreatment of disabled folks and the saviorism that exasperates this mistreatment. The rhetor of this film, Ervin, explains his first hand experience in the field of disability activism – as a disabled person. Ervin tries to amplify the voices of folks living with MD in hopes of abolishing pitiful fundraisers like those held by Jerry Lewis and the MDA. Throughout the film Ervin uses storytelling as a means to get his point across. He addresses his own ethos, as a man living with muscular dystrophy. He uses pathos, by expressing his human reaction to being pitied. Ironically, the fundraisers he fights against use a false pathos (pity) in order to sell charity. Ervin’s logos show up through statistics of poorly used MDA funds and the wrong “cure”. What I mean is, the telethon only supplies 30% of the MDA’s annual funds and of that so much is allocated to fancy scientist conferences and advertising campaigns. Ervin questions the viewer what “a cure” for MD even looks like and how do we get there. Is it funneling money into politically charged conferences? Or is it providing disabled folks with chairs, ramps, autonomy, and resources? This film really had me questioning where “charity” funds are going and from whom they are requested. I couldn’t help but think, if this is how a white, seemingly financially stable, man is treated in the world, how are QTPOC disabled folks feeling. As mentioned in the film, disability is not a monolith, every disabled person is a human with individual complexities, and I’d love to continue to learn more from different facets moving forward.

Overall the film was 4/5 due to only focusing in on one man, rather than getting a few perspectives. Although, it almost feels backwards for me, as someone without MD, to be rating how MD is portrayed in a film. Hmph.