Author: Tuesday

An anthology of hidden realities: A review of Disability Visibility by Alice Wong

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“There’s something horrifying about realizing people don’t see you as an adult when in fact you are an adult.” (135, Sjenneson)

The quote above comes from “How to Make a Paper Crane from Rage”, a contribution to Disability Visibility by Elsa Sjunneson, where Sjunneson discusses her experience with her anger and how the world defined her by her emotions as invalid. This just one of many personal narratives documented in Disability Visibility. Each entry captures the distinct views and life experiences of its author, allowing a small insight into their reality. Most entries are around 3-5 pages long allowing the reader to sit, enjoy a short story, and have time to reflect upon what they just read without information overload. This is a very effective presentation for the narratives included, as allows the audience to digest each message and work through their personal thoughts on the issues discussed.

Disability Visibility is Academic yet Personable. This is the books strongest feature. The reader feels like they are being talked to by a person passing by on the street. Each author has their own tone, but none are extremely clinical or academic. The anthology allows each featured author a moment to shine, to take up some space. “Taking up space as a disabled person is revolutionary” (115), as Sandy Ho states in her chapter (“Canfei to Canji”). The reader gets a chance to know them, hear their views, to humanize these voices. This allows a greater retention of each author’s messages, as one feels like they are personal being talked to and can find some familiarity in a topic foreign to many. This also allows for even the most skeptical of readers to find something to relate to, something they will engage with.

The beauty of Disability Visibility is the way every narrative differs from each other, but clear themes appear as one reads the book. Not all the authors have the same world views making these themes much mor meaningful. Sentiments such as “…. for me to claim the label, when I didn’t feel “disabled enough”, felt disingenuous” (56, Eric-Udorie) are expressed multiple times in completely different context. On the other side of the coin, many times a sentiment like “Crip space is unique, a place where disability is celebrated and embraced… (273)” appears. This wide swing in visible opinions allows the reader the opportunity to build a well-rounded picture of disability. This is the main reason I would suggest this book to people, especially if they have little experience with disability. I would also like to say it has been very enlightening as someone with some experience. Learning about struggles others have faced and how they work around those struggles has been inspiring and view-shifting. Over all I would rate Disability Visibility , 4.5/5.

Readers will find overall the personal experiences are mildly alarming at the worst. However, I can guarantee there will likely be one or two entries that are disturbing or triggering. These chapters will probably be different for every person. So, I think some cation is healthy when reading certain chapters. Though, if possible, I think everyone should try to read those chapters.  I have found that each chapter is impactful in its own unique way, and by skipping some you are missing out on a journey. That being said mental health and wellness is a bigger priority than learning a new perspective.

Ho, Sandy, “Canfei to Canji: The Freedom of Being Loud”

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Disability Visibility: First-Person Stories From The Twenty-First Century, edited by Alice Wong, Vintage, June30th, 2020.

Summary:

The author Sandy Ho starts her essay with the birth of her nephew. She describes an instance where she is reminded of her family’s outlook on disability, in particular the cultural origin of it. She explains that she had been told often as a child, she was lucky and should be grateful to have been born in the US. Her parents immigrated from Vietnam and Hong Kong before she was born, carrying the general sentiment towards disability that was common in East Asia at the time. For context Ho explains that, in 1968 Deng Pufang, a disabled man, founded the China Welfare Fund for the Handicapped and led the China Disabled Persons’ Federation. However, there would be no change in the openly hostile environment of East Asia until the 1980s. This is around the time Ho’s parents emigrated to the US. It was practically impossible for a disabled person to make a living and live a comfortable life before, but in the 1980s that was only gradually changing. People with disabilities were popularly considered useless. It was not until 1990s that a noticeable shift in attitudes occurred, with the introduction of the colloquial term “canji”, a word meaning sickness to replace the word “canfei”, meaning useless, when describing a person with Disability. Most of Ho’s relatives hold similar attitudes, some even encouraging her mother to abandon her at the hospital after her birth. Sandy ho starts to close her essay by discussing the tragedy of Sagamihara in 2016, an incident where nineteen disabled people where massacred, while twenty-six were left injured in a violent demonstration of the belief that disabled people should be euthanized. She makes a point; the saddest part of the whole crime is the fact that the Japanese government refuses to release the victims’ names to help the victims’ families from avoiding public shame for their relative’s disability. Sandy ends the essay by expressing how important she has found the struggle to express herself and exist in both her cultural world as an Asian American with a disability.

Quotes:

“Now I understand the exchange of silence for the comfort of other as oppression; in this case because I still fearing knowing how little value my life might hold for others.” (113)

“As a marginalized disabled person I want it all: for all of us to remain as fixtures in our shared world views, for the space to do more than survive, and for our voices and presence to experience the indelible freedom that comes with being louder. ”(116)

“Some relatives told [Sandy Ho’s] mother she should abandon [Sandy] at the hospital because [her] disability diagnosis meant [Sandy] was canfei, a “useless burden”.” (114)

Reflection:

This was one of the three sections of Disability Visibility that I found the most disturbing so far. Sandy discusses her experience in a less positive way than others have in this book. Not that any of them have been sunshine and rainbows. But Sandy is making a point to mention gruesome and ugly aspects of her knowledge of ableism. I appreciate this a considerable amount. While discussing positive aspects of being disabled is great, I think it is hard to fully grasp any situation without discussing the negative aspects of it. By no means is it a person with disability’s responsibility to convey these negatives, if they do not want to, they do not need to. But, It helps others gain insight when they do. Most of the events Sandy referenced, I did not know about prior. They are not really discussed, kept off the mainstream radar. Her sharing this has inspired me to do some more digging for issues surrounding disability and keep my eyes peeled for news relating to these discussions.

Validating Sins: a review of “Sins Invalid : an unshamed claim to beauty in the face of invisibility “

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“Sins Invalid” is a vivid anthology of art performance expressing personal experience surrounding sex and sexuality through the lens of disability. Performers share some of the intimate moments of their lives, highlighting the impact having a disability has had on their ability to engage in sex and romance, none. Their performances also shed light on how ableist culture has contorted their daily lives to be abnormal, introducing struggle into their lives. Sins Invalid is a disability justice performance project, run by POC artists with disabilities show casing the talent and creativity of disabled artists. The Film, “Sins Invalid”, depicts the thought process behind one of Sins Invalid’s showcases.  The artists behind Sins Invalid strive to create understanding of issues surrounding their race, sexuality, and lack of able-bodiedness, something society demand participants have, by directly playing against the stereotypical non-sexual and non-sensual script given to disabled people.

According to Petra Kuppers, in the essay “performance”, “Making choices about one’s intervention is part of what an artful and conscientious disability performance practitioner does…”(139). The question to ask, is what type of intervention are the members of Sins Invalid engaging in? The performers are very explicit in their intentions. They are purposefully fighting against oppressive ideas of able-bodiedness, heteronormativity and racism. However, “Disabled people often have been discursively constructed as incapable of having sexual desires or a sexual identity, due to their supposed “innocence” ”(168), as Robert McRuer in “Sexuality” puts, seems to be the main antithesis of the showcase. This is often the only thing connect one part of the film to another. The film has a lot of ground to cover and not nearly enough time, leaving some discussions as footnotes. But does this matter? Not if the viewer is inspired to look further into the injustices and struggles display by “Sins Invalid”.

Now, for the rating of this film, I would rate Sins Invalid 2.5 out of five stars. The reason for this poor rating is digestibility. “Sins Invalid” is a hard watch. Not because of the disturbing treatment of people with disabilities described at times but due to the extremely explicitness of some of the more focused performances. For some, this may not be a deterrent when watching the film. I applaud your comfortability around sex, I suppose. I personally found some parts uncomfortably pornographic, which other parts ripe with symbolism and deep thought were stained by. I know that I am not alone in this mindset. It is not that I am conservative or prude, it is my personal beliefs that intimacy should selectively share with a few and not the world. Of course, there exist a wide range of opinions on sexual expression and its place in society, so my dilemma may be amplified in some and non-existent in others. No matter what your stance on sex positivity and expression, one should consider the messages conveyed by Sins Invalid. There was a borderline freak-showness and over sexualization to some performances that puts the message Sins Invalid is attempting to impart in danger of being obscured by some of the acts. I believe that was purposeful chose embracing the freak show stereotype. My final impression of both the film and project is that the artists are attempting to normalize a disabled sexual experience, but they are inadvertently alienating a portion of the audience with the explicitness of their performances.

Note: Both quotes used above are from essays featured in the book Keywords for Disability Studies, by Rachel Adams, Benjamin Reiss and David Sirlen.

Kuppers, Petra, “Performance”

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Keywords for Disability Studies. edited by Rachel Adams, Benjamin Reiss,& David Serlin. NYU Press, 2015.

Summary:

The section, “Performance”, begins with three scenarios in which people with various disabilities may find themselves. Scenarios where they may be exaggerating or playing up the symptoms of their disability to receive the assistance they need. Kuppers makes the distinction that these are all subconscious performances of disability, they are done out of survival instinct. Then, a second type of performance is introduced. This second type of performance is purposeful with the intent to display disabilities. Purposeful performances of disability bring the focus away from the individual and towards community, whereas subconscious performances are meant to bring focus to the individual. Kuppers turns her attention towards the ethics of disability-centric performances. She asserts that a performer must carefully consider what narrative they are supporting and conveying with every detail of their performance. For example, considering if their role or parts of the script promote the segregation of differences, through excluding performers with disabilities, displaying harmful stereotypes, or the performance is inaccessible. The point of the purposeful depiction of disabilities is to break down existing stereotypes, humanize people with disabilities and include them in the art world. Kuppers ends this section by describing how the lives of disabled people can be highlighted and illustrated through art  performances in a way that positively impacts all, especially others with disabilities.

Quotes:

“How to live artfully; how to move nimbly through discursive fields, tipping past stereotype traps; ducking the diagnostic, medica and charitable gaze: These are the kinds of guerilla skills most disabled people learn in a disabling world.” (pg. 139)

“In different ways, these staged performances in public all subvert some expected scripts (…) and leave others untouched.” (pg. 138)

 “Wider aesthetic issues include how disability performance practice is influenced by the histories of the freak show, by cultural fascination with the grotesque, by eugenic discourse, by the kind of audience engagements characterized by sentimentality, by notions of virtuosity and its space in modernist and post-modernist practice.” (pg.139)

Reflection:

I found the opening section on subconscious performance to be the most interesting thing discussed in this section. I can see how what Kuppers was talking about could be misused to justify the faking-it myth. But the exaggeration discussed, I think can be found everywhere. It is just a part of communication. Most people play up their sexuality to advertise to potential partners; women and men will sometimes over express their gender; Minority culture groups will practically brand themselves with their specific culture. My impression that non-binary people are not trying to fit into overly defined category like the binary genders most of the time, so there is no real way to over perform. We dramatize a simple thing about ourselves when we want others to no beyond a doubt that aspect of our lives is true. Our performances are ingrained into our subconscious from life experiences. This makes the fact that a person with disability may over emphasize their disability to receive assistance accessing basic necessities and rights incredibly sad. This leads into purposeful performance. I got the impression that the types of performances Kuppers was referring to in this part were for the purpose of normalizing disabilities. Making it so that people with disabilities will not be conditioned to put on unintentional performances to receive help, to be seen. This is why scripts surrounding or including disabilities need to be carefully thought out, why more disabled people need to be included in performance art without their disability being made into a spectacle.

O’Toole, Corbett Joan. “Celebrating Crip Bodyminds”

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Fading Scars: My Queer Disability History, 1st ed., Autonomous Press, June 9th, 2015, pp.13-53

Summary

In this reading, O’Toole explores the boundaries they faced while writing about other disabled people and their stories. O’Toole starts their exploration by explaining their beliefs about why disability should be talked about and how discourse if thoughtless can enable ableist rhetoric. The most significant aspect of O’Toole’s writing is their classification of people as “disabled”, “nondisabled”, or “unknown”. They explain their reasoning for including people’s disability status, is to combat erasure of disability, one of the forms of ableism. Early on, O’Toole establishes their belief of two distinct forms ableism, erasing disability and idolizing perceived struggles. The latter is mostly done by non-disabled individuals and focuses on assumed struggles without seeing the disabled person as a person. This leads naturally into a discussion of society’s relationship to the concept of “normal”. They make a point that the more normal an “abnormal” condition is made the more rights people with that condition will be able to enjoy. This is the main reason they purposefully mention disabilities but do not make it the focus of a person’s introduction in their book. The language used around disabilities varies widely depending on who is speaking. O’Toole voices a hesitance to use medical and “formal” terminology as often that vocabulary is rejected by disabled groups. However, they do express a need to use it as most people who do not consistently interact with disabled people only know the “formal” terminology. They also make a point that outside of the “formal” language used to discuss disability there is not a consistently agreed upon lexicon. So, for the sake of transparent communication they used a mix of the “formal” and the commonly used lexicons. They also acknowledge the potential labeling people has for harm. This is the reason they classify people as “unknown”, to avoid labeling people something they have not chosen to be known as. By using this method, O’Toole is respecting other’s identity while bring awareness and normalizing situations that would otherwise be portrayed as different or downplayed.

Quotations

“Refusing to explore language options for people’s relationship to disability harms the nondisabled people by ignoring the ways that ableism also impacts them as they go through life with disabled people.” (43)

“There is no standard grammatical structure in how people use their chosen disability-specific terms. People with hemophilia call themselves ‘hemophiliacs’. The deaf community has a convention of using ‘Deaf” to mean people that are affiliated with the cultural and linguistic community of people who use American Sign Language and ‘deaf’ to indicate that someone has a hearing disability but is not necessarily tied to the cultural and linguistic capital ‘D’ Deaf community.” (37)

“A significant problem in American culture, as in many Western cultures, is the presumption that preforming ‘normally’ is required for competence to be presumed.” (22)

“When deviations from “normal” occur, our society reacts as if all efforts should be made to bring the deviant back to as close to normal as possible, and if that is not possible, to eliminate the deviant.” (18)

Reflection

I enjoyed reading this excerpt quite a bit. O’Toole probably had the most understandable explanation of “normalizing disability”. To be completely honest, I have been struggling to understand what each of the examples we have seen so far in this class mean when they say they want disability to be normalized. Up until this point, I have just placed the concept to the side as much as I could. That is a very unfortunate way approach the conversation we have been having as normalization is reoccurring theme. I also feel as if O’Toole has given me some of the context that has been lacking in most of the material thus far. The discussion of language and O’Toole’s method was very thorough addressing all sides of the conversation. I think the biggest part of O’Toole’s writing I noticed was their honest attempts to reach all sides. They were purposely tailoring their writing so that it would be understandable to as many people as possible. They were not catering to one group of people but considering all potential audiences. I am interested to hear their perspective on some other intersectional topics. They clearly are very conscious of differences and struggles that relate to those differences. Terminology seemed to be the largest struggle they faced. This is understandable because if used improperly, someone could be offended and/or the original narrative can be completely lost. I found the way they approached labeling interesting. I am personally very conflicted about labels. I at this point pretty much refuse to apply a label to myself in any way. I have never felt comfortable with any label I have been assigned. And I say assigned, because even if it seems that I am the one choosing the label, I am not. Most labels, even chosen ones, are based on how others perceive us and how we relate to others’ perceptions. I do, however, understand that labels really help people feel comfortable. So, it was interesting to see someone make a case for labels and a case against label usage at the same time. Without the explanation they gave, I believe I would have probably taken some issue with them labeling people as disabled or not throughout their writing.

Sympathy or Pity? Jerry’s Orphan’s Fight

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The short film, “The Kids Are Alright”, documents the efforts of Mike Ervin and Jerry’s Orphans to stop the Jerry Lewis MDA Labor Day Telethon, the pinnacle of a pity fest in the eyes of the Orphans. Throughout the film, Ervin gives first hand accounts of the protest efforts starting in 1991 to take the annual telethon off the air and address the ill-intentions of the Muscular Dystorphy Association (MDA). Jerry’s Orphans is a disability rights group founded by Mike Ervin and his family to oppose the use of pity in MDA National Telethon. Mike Ervin was one of Jerry’s kids in his childhood, and believes it is important to address a one-sided narrative in which those with MD live suffering. Throughout the film he shares his perspective as a person with MD and on the harm that the MDA’s pity campaign inflicts upon the MD community.

“The Kids Are Alright” is a thought provoking film, earning three out of five stars. The message is left open-end in many instances but not in an intentional way. This over all began to undermine Mike’s message as it made it apparent the perspective shown was more subjective than objective in some instances. Mike’s message still stands clear and proud at the end of the film. However, There is a point in the film where two sides of the same coin were shown clashing. This is where the film falters, showing both sides are appealing to the audience’s emotions. As a viewer, challenge yourself to consider both sides.

Jerry’s Orphans demonstrated a respectable dedication to their cause, turning up to the Broadcast center every year for a sit in. The protest shown and discussed were largely ineffective even when reaching a national audience consistently. This was odd considering, the efforts of Jerry’s Orphan were exemplary non-violent protests. Towards the second half the film the root of this issue was explored. There seems to have been a visceral reaction to the protests. This is never directly examined. Ervin states during the film that he believes a loss the MDA would be the Orphans’ message being out there at all. This is not an unusual sentiment amongst activists in any way. Eventually, someone will listen and join the fight.