Disability Visibility

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.

In Sickness and In Difference

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(I apologize in advance but I am doing two essays. I figured a few of us might choose one of them, but I still wanted to give my thoughts on it!)

CW: Sex toys

Keisha Scott’s “Last but Not Least- Embracing Asexuality”

Jamison Hill’s “Love Means Never Having to Say… Anything”

“Love Means Never Having to Say… Anything” begins with Jamison Hill’s desire to say “I love you” to his partner, Shannon. Hill recounts the times when he thought he was in love with previous partners, when he could still speak and have conversations with them, before defining his condition of myalgic encephalomyelitis, a condition that keeps him bedridden and unable to speak. Hill continues by speaking about how he had met Shannon and how their shared condition turned into a relationship, and how that relationship between two sick people can be just as good as a relationship between a sick person and a healthy person. He talks about the way they take care of each other and share their lives together without vocal conversation and he ends with his painful attempt to vocalize his love. The essay finishes with his failed attempt, but Shannon’s understanding of what he wanted to say.

“Last but Not Least- Embracing Asexuality” begins with Keisha Scott’s recounting of always being the last person to hit milestones. From her blindness, to getting her period late, Scott tells of how she felt different from everyone around her, but she desperately wanted to be a woman. She continues with talking about how all of her friends were interested in children, boys, and having sex, being jealous of the attention that her friends got from men, and the desire to gain respect by finally becoming a woman via getting her period. She talks about how she had started by conforming to gender norms for women but was still late in the process, how she first experienced desire to when she first saw porn and masturbated. Scott recalls being disillusioned with the concept of sex, how nothing felt right and that she took a while to understand the sensation of sex. Scott then talks about buying sex toys, dodging questions about sex and relationships, and feeling a “wrongness” that she didn’t align to societal norms. Scott continues by talking about how she took a course on feminism and sexuality and how a conversation about sexuality and disability made her to begin questioning the meaning of “asexuality”. Scott ends the essay by researching asexuality, finding peace in the narratives she read and explaining that she has no desire for sex or children, contrary to what the world around her says.

Quote Bank:

“When we are together, we spend weeks in bed, mostly holding each other, our bodies aligned like two pieces of broken plate glued back together” (Hill, 263)

“These failed romances remind me of the baffling incompatibilities two people can have, but also how love can transcend even the most insurmountable obstacles when you find the right person” (Hill, 264).

“I had never thought about it like that- the possibility of two sick people being in a successful relationship together” (Hill, 265).

“I started to read more on asexuality, read personal stories of others- both disabled and able-bodied – who were completely fine: some were married, some had kids, some have sex once in a blue moon, some have never had sex, some were single” (Scott, 127).

“I already faced discrimination and ableist views from society in so many other ways; I couldn’t bear it if my sexuality ended up being determined by my disability” (Scott, 127).

Reflection:

I chose to do two analyses because I identified so strongly with one, but I also understand that it might be a popular choice in our cohort. So firstly, I will talk about Jamison Hill’s “Love Means Never Having to Say… Anything”. There is a societal pressure that in relationships, certain things *have* to be performed. A romantic first kiss, a declaration of love, a passionate urgency in the early stages that gets rekindled over time. I think that Hill does a great job in subverting these expectations through his writing of his relationship with Shannon. He acknowledges that kissing next to your expended body fluids is not the most romantic thing, but for two sick people, it works because there is a mutual understanding of illness. He might not be able to vocally say “I love you”, but the ways in which they take care of each other are acts of love in themselves, not needing to be spoken aloud. As someone who is a hopeful romantic, I understand to the depth of his definition of “two broken plates glued back together”. There is a fascination with perfection in relationships as well, everything has to appear perfect at all times to the world because no one should know if you have tension in your relationship. However, Hill defines the two of them as broken plates, something deemed by society as “apart”, but together they are “whole”. While they might not be “broken” in the same way, it is through that brokenness that they find wholeness together. The art of *kinstugi*, or repairing broken pottery with gold, allows the artist to highlight the brokenness through something beautiful, and I think that is exactly what Hill has done in this essay. He has taken the brokenness and uniqueness of two people and shown how together, their love and understanding is so beautiful it is beyond words or expectations.

“Last But Not Least- Embracing Asexuality” is one of the most relatable pieces of writing I have read all year. Aside from being blind, the bulk of Scott’s essay was a reflection of my own experience with having chronic illness and discovering my sexuality. As a whole, Scott talks about the dual struggle of being different from her blindness, but then also not having the same feelings and desires as her peers. I have written about the concept of asexuality and disability before, but I will reiterate the point that those who identify as asexual are even more likely to be ostracized in the spaces they occupy. For one, if they are in heteronormative spaces, it is possible they will be ostracized for being disabled. But in disabled spaces, where people with disabilities have fought to be seen as regular sexual beings, asexuals are more likely to be ostracized for not pushing the sexual narrative. There is a unique difficulty that presents itself in these spaces as is, but to have a sense of dual-difference is even more challenging. Despite all of this, I cannot help but feel so validated in Scott’s narrative that she created. In a world that is simultaneously so sex-forward but prudish towards the expression of sexuality, to have any sort of dual-identity with asexuality can be a very lonely process. I can certainly identify with her finding peace in the stories that she read of other asexuals, and it brings me peace to read her narrative. From a disability studies standpoint, I would absolutely recommend anyone studying the intricacies of intersectionality to read this essay. It does a fantastic job at weaving together the truths of gender performance, societal expectations, sexuality, disability, and the general sense of belonging that plagues our existence.

Invalid No More: Disabled Performance in “Sins Invalid”

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Sins Invalid is a short film featuring a troupe of the same name from the San Francisco area. The troupe is composed of performers with varying disabilities who express their sexuality and experience on stage for a live audience. The film chronicles the creation and heart of the troupe, formed out of a need to shift the narrative of disabled sexuality from something grotesque or shunned to something visible and celebrated. Sins Invalid is an active performance to display the varying sexualities and sensualities of each performer and to give the audience insight into the beauty of disability.

When analyzing the film from a disability theory angle, it is clear to see the subversive nature of the film. Robert McRuer explains in his essay on “Sexuality” in relation to disability theory that, “exclusion from normality or a presumption that one could not be part of the heterosexual/homosexual system, in other words, sometimes allowed for disabled pleasures and disabled ways of knowing that were not reducible to dominant systems of heterosexuality that were dependent on ablebodied definitions of sexual norms” (McRuer, 169). Given that in the 20th century people continued to find ways to label disabled sexuality as “abnormal”, there  is a need to break out of the othering that comes from heteronormative analysis of disabled sexuality. Sins Invalid as a performance troupe finds their own ways of subverting the narrative of abnormality, transforming the concept of disabled sexuality into something beautiful and sensual. This explicit subversion is emphasized in the lapdance performance of Maria Polacios, where she turns her wheelchair into an object of sexual mobility and sensuality. Something that the heteronormative society would see as abnormal suddenly appears erotic, freeing the label of disabled sexuality.

Patricia Bearne, Co-Founder of Sins Invalid, speaks in the film about there being a distinct lack of disabled bodies on stage, how people with disabilities need a space where they can perform and grow as performers. In a short story labeled “The Beauty of Spaces Created for and by Disabled People”, s.e. Smith defines the concept of crip space as “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, 273). This is exactly the kind of environment that the founders of Sins Invalid have fostered. Leah Lakshmi Piepzna-Samarasinha expands on this concept by speaking about how the first time she watched the show, she was amazed and moved to tears by the the notion that the queer and disabled performers did not have to hide any part of their identity while on stage. Sins Invalid as a troupe is working towards freeing the boundaries that have been set by society for people with disabilities, expanding the definition of what it means to live free lives full of love. In Petra Kupper’s analysis of “Performance” in disability studies, she explains how in performances like these “the action moves out from the individual and toward communal action, and a staged performance becomes a way of presenting disability in public” (Kuppers, 138). For the people who are disabled in the audience, this is a celebration of the lives of fellow people with disabilities. For the nondisabled in the audience, it is a chance to see another facet of disability, one that has long since been locked away by society. All around, it is another chance for the audience to see how acceptance and support can create stunning and captivating narratives for all viewers.

As someone who is asexual, this would not be my first choice of a performance to view. However, I do understand the need to shift the current accepted narrative that people with disabilities are without sexuality or that their sexuality is otherwise repulsive. Interpretive performances are also not my first choice of visual performance, but I think that each scene represented in the movie has its own beauty. If I were to watch performances that are not overtly sexual, I would have an easier time enjoying them. But that is a personal preference to avoid blatantly sexual media. However, I am struck by the moments of spoken word, specifically the performance of Leah Lakshmi Piepzna-Samarasinha, relating her relationship to an adventure through the cosmos. And I can appreciate the stories that they are trying to communicate and the medium of which they are doing so, and I hope that they continue to find joy and freedom in their performances. From a professional standpoint, 4 out of 5 stars, from a personal standpoint, 3 out of 5.