Author: DellFrog

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.

“Sexuality” by Robert McRuer

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“Sexuality” by Robert McRuer, selected from “Keywords for Disability Studies”

Summary:

McRuer begins by acknowledging that the word “sexuality” is already intertwined with words like “freakish” and “abnormal”. He introduces Michel Foucault’s concept of the “cures” and “visibility” of sexuality as a system of control, often to obtain a sense of normalcy or correction. McRuer then compares Foucault’s views of “sexuality” as being similar to “ability” and what resulted in sexuality being pathologized, or specifically linked to a disability. McRuer acknowledges that sexuality is a social construction, which brought out the emergence of heteronormativity and ableism. Because the two were so linked, McRuer talks about how homosexuality led to “feebleminded” diagnoses and stricter regulation for control. He bridges the link between an “abnormal” sexuality being caused by illness or disability, which creates the conception that people who are disabled have an excessive sexuality. These two “excessive” notions led to violent treatments, misinformation about both sexuality and disability, and eventual ruling by the Supreme Court for sterilization. McRuer discusses a shift in the 20th-century from excessive sexuality and disability to the notion that people with disabilities are without sexuality at all. He mentions the link between poor and people of color being seen as “excessive” while white and middle-class are seen as “without” sexuality. Following this, he talks about the idea of people with disabilities having alternate sexual experiences outside of what was understood, which leads into modern day rebellion of both “excessive”, “innocent” and “alternative” sexuality. McRuer ends with discussing the efforts of disability activists against prior notions, and the acknowledgement that efforts are still ongoing and a source of conflict for the modern day person with disabilities.

Quote Bank:

“…in other words, sexuality was endlessly talked about, managed, pathologized, and (often) “corrected” ” (167).

“In 1927, for instance, the U.S. Supreme Court famously ruled that Carrie Buck, who had been deemed “feebleminded” and institutionalized for “incorrigible” and “promiscuous” behavior and who became pregnant after being raped, must be compulsorily sterilized” (168).

“Disabled people often have been discursively constructed as incapable of having sexual desires or a sexual identity, due to their supposed “innocence” ” (168).

Reflection:

In all of my academic studies I have come to understand that if there is one thing that white men love to do, it is to control others. The author does a fantastic job at digging into the intertwined history of sexuality and disability and how they cannot truly be analyzed without the other. The pathologization of sexuality as a disability is in itself offensive, but it also gives the people in power the ability to declare someone “of unsound mind” and to strip them of all autonomy altogether. The development of the “correctional” treatments like shock therapy or sterilization was an inhumane way to tell people with disabilities that they had no choice in life, not even a choice to love and be loved without it being controlled. The case of Carrie Buck is not new to me, and I am fully aware that sterilizations like this continue to the present day. Often people assume that if someone has a severe disability, whether of the body or mind, others assume that the person is “too disabled” to have desires to seek out relationship, sexual or romantic. This concept is widespread enough that growing up and seeing people in wheelchairs or people with Down Syndrome in relationships was a televised phenomena, including shows like “Little People, Big World”. Episodes of medical dramas are committed to showing people with disabilities who are in relationships as “strange” or just straight up ill, especially if the other partner is not disabled. But I chose this chapter specifically because I was curious about the idea that people with disabilities are often seen as “innoccent” or “lacking sexuality”. There is a modern day movement to take back sex and sexuality for people with disabilities, not in an excessive or alternative notion like the text discusses prior, but as a sort of “this is me” kind of mentality. But I wanted to address a very specific point of tension within the disabled community on the base of sexuality. While there is a danger of being “too loud” (read: excessive), or “too kinky” (read: alternative), there is an even finer line between the concept of innocence or being without sexuality. Specifically, there is a subgroup of the asexual community who have an inner struggle of recognizing their sexuality (asexuals being people who experience no sexual attraction) and being ostracized. On one end, the LGBT community will always look at them as “disabled”, and sometimes not in a positive context, but the disabled community, especially those fighting to be recognized as sexual, look at them at perpetuating the “innocent/without” stereotype. So not only do people with disabilities walk a fine line to even be recognized as human at times, but they are also often denied their true lives, living and loving who they want because there is even added pressure being LGBT+ and disabled.

Citation:

Adams, R., Reiss, B., & Serlin, D. (Eds.). (2015). Keywords for disability studies. “Sexuality”. McRuer, R.

“Reassigning Meaning”: Redefining the Disability Community

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Linton, Simi. “Reassigning Meaning”. Claiming Disability: Knowledge and Identity. (New York: New York University Pressm 1998).

Summary

Linton begins by informing the reader of the disabled community’s efforts to reclaim what it means to be disabled and the terminology involved. She talks about the oppression of the disabled community, how the previous way of defining and identifying the community no longer serves purpose, accompanied by a brief discussion of how the medical definitions of disability form certain stigma in practice. Linton continues by looking at the term “disabled” as an identity marker and how the definition creates a separation between “disabled” and “non-disabled”, which should remain as a way to identify community but not to exclude others. She covers the concept of people without disabilities creating alternative language to boost the views of people with disabilities, including the term “special education” for children. Linton also discusses how “nasty words” have also been used for the disabled community and how the concept of overcoming denotes an inferiority compared to others without disabilities. In discussing the concept of “passing”, Linton covers how exhausting and minimizing that can be for someone with disabilities, and how the concept of normal vs. abnormal creates a dichotomy of self-worth and identity. She also talks about how people with disabilities are often seen as passive “victims” of their conditions, rather than in control of how they live their lives. Linton then discusses how some words have double meaning and can ascribe hurtful ideas to people with disabilities and how the connotations of the prefix “dis” come with the concept of “to be apart”. Linton concludes the writing by talking about the need to denote a socio-political axis category for which disability can be separated from its medical origins.

Direct Quotes:

The decision to assign medical meanings to disability has had many and varied consequences for disabled people (11).

Because it is physically impossible to overcome a disability, it seems that what is overcome is the social stigma of having a disability (17).

The message that I read in this action: You are like everyone else, but only as long as you hide or minimize your disability (21).

Reflection:

There is a certain desire for people to be able to put a name to something, whether to then identify with the name or to use it as a way to define and separate two entities. While this desire is natural, it certainly can create some problematic situations, as it has for the disabled community. As someone who understands science, I understand the need to create medical definitions of conditions that people have as a means to discover treatments or accommodations that can be created to give them greater access. However, I do understand that the point was lost along the way and it has instead devolved into a means of separating the abled from the disabled. I have never appreciated the exclusionary efforts of people to created spaces where people exist “within or without”, and efforts like this drive me up the wall. That people with disabilities are asked to “overcome” is a failure within itself. People with disabilities have been the other for so long that it is absolutely possible that the only time an abled child or teen has had interactions with someone who is disabled is through inspiration porn. All they know are the “overcoming” narratives instead of stories of the lives of people with disabilities or the stories they have to tell that are not specifically about their disability. And where is the humanity in that? Why do people with disabilities have to prove themselves “normal”? When growing up there is such an immense pressure to be “normal” or to “fit in” that parents have to tell a child, “It is okay to stand out!” Then when people do stand out, they are scrutinized until they feel the pressure to conform, or “pass”. As a society, we have created a mainstream understanding of how a person should look, act, think, and exist, and when someone doesn’t fit the mold, or God forbid they have a disability, they are “abnormal”. I appreciate the author’s emphasis on redefining these terms that have for so long been used as inherently ableist definitions for a faux state of being. Not only will this effort require a reshaping of the understanding of disabilities, but it will also require a redefinition of how we view normalcy. People deserve the choice to put a name to something they experience, but they also deserve the right to be seen as they are: whole.

**Note: I use the term “disabled community” because “community of people with disabilities feels disingenuous. However, I currently stand by using “people with disabilities” as opposed to “disabled people”.

Child Abandonment: How Jerry’s Orphans Sparked Thought

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“The Kids Are Alright” is a short documentary filmed with the intent of showing the efforts of “Jerry’s Orphans”, a movement created by Mike Ervin. Ervin began the movement based on his experience as a poster child for the Muscular Dystrophy Association (MDA) and their yearly telethon. Ervin and his friends, other people with muscular dystrophy or close ties to it, began protesting Jerry Lewis’ yearly telethon that was produced by the MDA in the early 1990’s. Their efforts remained unrecognized and scorned even after sharing their personal experiences and how the telethon and the MDA were hindrances to their experiences, rather than boons.

During the documentary, Ervin explains how early TV icon Jerry Lewis created slanderous narratives toward the muscular dystrophy community and how the MDA’s efforts are more for personal gain than the gain for people with muscular dystrophy. When Lewis called those with the disability “half a person”, Ervin, born with mild muscular dystrophy, was outraged and disgusted that someone with no experience could ascribe such a concept to his life. Ervin and his friends, nicknamed “Jerry’s Orphans” as a satire of “Jerry’s Kids”, call attention to the fact that the MDA, TV station, and the volunteers involved with the yearly telethon have no right raising money for an effort that will not directly affect people with muscular dystrophy. Their pleas for people to stop pitying them and to actually learn about where the money raised by their efforts actually goes often were brushed aside. Audiences could not imagine why people who live with muscular dystrophy would be so against an organization working to fund a cure.

Those outside of the muscular dystophy community do not understand what it is like to live, and to thrive, with the condition. Volunteers for the telethon believe that they are raising money to find a cure, to put an end to this genetic disease, an act that they believe is charitable and good-natured. However, the constant dehumanization put forth by the MDA and its constituents remained an active agent of harm against people with muscular dystrophy. This film challenges the audience perception of these mass fundraisers and organizations that are often run by people with no ties to the disease. Jerry’s Orphans ask that instead of searching for a cure, we might instead start developing accommodations and changing the narrative of how we view people who have visible, or invisible, disabilities.

While “The Kids Are Alright” pulls no punches describing the affect of years of dehumanization from the MDA, it sparks a powerful thought that audiences should consider: am I listening to narratives of people with first-hand experience or am I trusting in pseudo-benevolent organizations with ill intentions? The film can be viewed for free on Ervin’s website, earning it a 5-star rating for accessibility.