Author: Turnip Friend

A Supernova-Sized Burst of Accessibility: RAB Response

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  1. “How a Blind Astronomer Found a Way to Hear the Stars” by Wanda Díaz-Merced from Disability Visibility

  2. Summary:

Wanda Díaz-Merced’s short personal narrative, “How a Blind Astronomer Found a Way to Hear the Stars” was originally performed as a TedTalk in February 2016. Beginning with a description of how supernovas work, Díaz-Merced explains how the star she was studying at the time she lost her sight, became a magnetar. Detected by their gamma-ray bursts, astronomers are able create pictures of the most energetic part of the supernova explosion. Something important to understand about them is that people are unable to see these events occur with the naked eye because we can only see a small part of the electromagnetic spectrum. Díaz-Merced emphasizes this because the only reason why astronomers create visual constructions of supernovas is because its a common and generally easy way to interpret them. That is, if you’re a sighted person.

When she lost her sight, Díaz-Merced thought that she might have to leave her field because of the lack of accessibility. Instead, she decided to make the work accessible herself, so she could continue to study the work she loves. Díaz-Merced. Because all light is a curve which can be turned into a table of numbers, those numbers can be translated into sound. Her and her collaborators worked really hard on this sonification project that had never been done before, and now “she is able to do physics at the level of the best astronomer,” (Díaz-Merced, 170). After telling her story of accessibility innovation, Díaz-Merced bought the TedTalk to a close with a last thought for the audience, which is that anyone can develop a disability in their lives, and most people eventually do. However, this doesn’t mean people should be excommunicated from their area of work. Scientific fields in particular have many systemic barriers in place that aren’t keeping up the outer world’s increasing focus on accessibility.

3. Quotations:

-“If people with disabilities are allowed into the scientific field, an explosion, a huge titanic burst of knowledge will take place, I am sure” (Díaz-Merced, 173).

-“I think science is for everyone. It belongs to the people, and it has to be available to everyone, because we are all natural explorers” (Díaz-Merced, 172).

-‘While other countries told me that the study of perception techniques in order to study astronomy data is not relevant to astronomy because there are no blind astronomers in the field, South Africa said, “We want people with disabilities to contribute to the field”‘ (Díaz-Merced, 172).

4. Reflection and Review:

I found the last quote I listed to be particularly interesting because when the various countries Díaz-Merced offered her new techniques to rejected them because there was no perceived need, its so clearly obvious that the reason there aren’t blind astronomers is because of the lack of accessibility which she was attempting to correct. It reminds me of a piece I read once about planes that have seen combat, where when the surviving plane came back from battle, engineers looked at where the damage on them was, and wanted to reinforce those areas. However, eventually someone pointed out that these were the surviving planes that they were looking at, and what they really need to do is to reinforce the areas of the planes where there was no damage, because those were in fact the places that if hit, would send the plane spiraling to the ground.

My big takeaway from this piece is that organizations can’t look at the people who maneuver easily through their field to decide how to accommodate people with disabilities, because nondisabled people are the ones the organization was built to cater to. They have to look to the people who are being left behind. They need to listen to them and their needs, and then work to create space for them, by either allowing disabled people to innovate the system themselves like Díaz-Merced, or working in groups that have direct contact with people with disabilities and prioritize their thoughts.

Here’s a link to the TedTalk:

Wanda Diaz Merced: How a blind astronomer found a way to hear the stars | TED Talk

Sexuality and Defiance: A Review of Sins Invalid

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Summary:

The short film “Sins Invalid” showcases a performance project by the same name, created by disabled artists Patty Berne and Leroy Moore. This collection of performances by a collection of artists of all disabilities, races, ethnicities, genders, and sexualities focuses on the nuances of navigating sex, desire, and relationships while existing in a world that is incredibly hostile to any displays of sexuality in disabled people. The first performance by ET Russian shows them removing their prosthetic legs for the night and rubbing lotion on their legs while a narration plays over the scene describing a past sexual experience with another disabled person who was injured in a car crash. Next, Maria Palacios explains her relationship with sexuality as a wheelchair user and how she was taught that she would never have sex, get married, have children or even grow up. Palacios also describes the horrible medical treatment she experienced in her youth that dehumanized her. After these introductory performance, Sins Invalid co-founder Patty Berne comes onto the screen and explains why she wanted to create this performance troupe with Leroy Moore, highlighting the way she was paraded around her elementary school naked for doctors to analyze. This performance project is a way for these disabled performers to own their bodies and display them for an audience in a way that is empowering for themselves and others.

Next, the film explores the United States’ past of eugenics, beginning by listing the “5 D’s of types of people who should not reproduce”: Degenerate, Dependent, Deficient, Delinquent, and Defective. Performer Seeley Quest takes on the story of a woman named Carey whose mother was in colony of people that fell under the 5 D’s. When she was young she was assaulted and became pregnant, but was forcibly sterilized on the basis of her family history of disability. One of the most difficult performances to watch came next, with the co-founder Leroy Moore on his knee in the nude while another performer pulls a long list of insults from his mouth, symbolizing how the words of the world are easily internalized. After that, deaf dancer Antoine Hunter explains the experience of non-deaf people telling him he shouldn’t dance because he can’t hear music. We see Hunter dance without any soundtrack, exploring an internal rhythm he seeks to share with the audience. Next, Leah Lakshmi Piepzna-Samarasinha explains how poets and writers like her too are able to join Sins Invalid and shares a poem she wrote about the love between herself and another disabled individual and how pure and strong their devotion to taking care of each other is.

Later, Leroy Moore performs a scene of going to the doctor in sexual bondage attire and then performs a scene with Juba Kalamka where they play dominos and joke with each other until it turns to hugging and kissing. Then, performer Matt Fraser conducts a sensual bath scene where he shows the audience how he cleans himself, making use of his legs to reach areas his arms are unable to, and invites the audience to see his beauty in the way shower scenes in movies and television often sexualize the love interests of the protagonists. Right afterwards we watch Fraser in a new scene being beat up and eventually killed by an invisible assailant which we find out is an embodiment of the microaggressions he faces in day to day life. The most moving performance for me came next, where artist Nomy Lamm dressed in feathers and wings sings an eerie wordless song atop a nest of limbs. Nearing the end of the showcase, Piepzna-Samarasinha orates another of her pieces, which is a story about the experience of flirting with another disabled individual online and dreaming about their possible life together. Finally, the last performance Sins Invalid gives us is a dramatic chain of events between performer Rodney Bell and Seeley Quest where at first they are in an intimate and tender moment that turns violent when Quest attacks Bell, trying to use his vulnerabilities as a wheelchair user against him. In the last few minutes of this scene, Bell rises up into the air with his wheelchair, twisting and turning and is displayed in front of a red cross, reminiscent of the crucifixion of Jesus Christ.

Quotations and Observations:

From “Disability and Sex” in Keywords for Disabilities, Margrit Shildrick writes, “…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). I thought this quote is depicted very nicely in Sins Invalid because inherent to the production is the fact that each of these disabled performers have different experiences and stories based on their lives as people of color, queer people, and each of them utilizes different mediums in which they choose to perform their stories. I think one of the reasons why Sins Invalid is so good, is because one of their goals as a production is to essentially scrap the “convenient models of social management” in favor of showing the world who they truly are, safe within their community of people who support and cherish their art.

Another quote from Keywords for Disabilities from the chapter “Sexuality” by Robert McRuer says, “Disabled people often have been discursively constructed as incapable of having sexual desires or a sexual identity, due to their supposed “innocence” ” (McRuer, 168). I connected this quote to Sins Invalid in particular to a section where a performer is expressing her frustration with societies inability to allow disabled people the experience of seeing people like themselves on the screen getting to experience sex just like non-disabled people are allowed to. Sins Invalid is a way for people to show off “An Unshamed Claim to Beauty in the Face of invisibility” as stated on their website.

Review:

I found the short film Sins Invalid to be incredibly moving in the way the performers were able to get down to the nitty-gritty feelings of pain, weakness, love, and strength that have experienced and continue experience in their lives. Before I wrote this post, I watched it one more time in order to catch the detail I may have missed in our class viewing, and each performance so aptly contends with the oppressive power structures they face, wrought with symbolism and humor. I really would like to see a live performance of Sins Invalid if I ever get the opportunity because only seeing snippets of many different performances, I would assume, pale in comparison to the real experience of getting to see it live. I rate Sins Invalid a 5 out of 5, because of the masterful attention to detail of the camera work, as well as the finely chosen scenes that moved me in such a short amount of time.

RAB Reflection of “Keyword for Disability Studies”- Chapter 47: “Queer”

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  1. “Queer” by Tim Dean from Keywords for Disability Studies

2. Summary:

Dean starts this section of the book explaining that in the past, the term “queer” didn’t just apply to people in the LGBTQ+ community. It was also a word used to describe people with physical or cognitive impairments. He then explores how the term “queer” doesn’t oppose heterosexuality, which many people assume. It actually opposes heteronormativity, “the often unspoken assumption that heterosexuality provides the framework through which everything makes sense.” Coined by Michael Warner in the early 1990’s, the term “heteronormativity” was invented to supplement the existing concept of “compulsory heterosexuality” which had been coined by feminist writer Adrienne Rich in the early 1980’s. Dean then explains that “compulsory heterosexuality” is dependent on “compulsory able-bodiedness” because heteronormativity first requires that the participants adhere to the idea of a standard “normal” body. This idea created by disability theorist Robert McRuer, lead to a combination of Disability Theory and Queer Theory to develop “Crip Theory.”

The author states that, “The central claim of this area of scholarship is that, beyond examining the bodily conditions or the physical environments that produce disability, disability studies should also examine those less tangible but profoundly distorted social expectations that presume what bodies should look like and be able to do.” When thinking about disability and sexuality through a queer theory lens, we come to the conclusion that the human body and its capacities are not biologically determined, but are formed and influenced by the process of normalization. Likewise, sociologist Erving Goffman describes how everyone has the potential to fail to adhere to identity norms, and therefore even the so-called “normal” people are put at risk by the system they perpetuate and benefit from. Next, Dean brings up medical historian Georges Canguilhem’s idea that “significant variations from what is statistically normal for a population need not imply pathology.” This concept is important because our perception of variation equating sickness is only upheld when mathematical norms and evaluative norms are conflated together.

Dean then moves onto the AIDS crisis, which he describes as a time when social and medical norms intersected more powerfully than ever before. He references a quote from literary scholar Ellis Hanson’s idea that the origins of Queer Theory came from disability studies due to the activism during the AIDS crisis which centered on the concept that the disease was not isolated to groups such as IV drug users and gay men, though the groups were severely impacted. Dean’s final idea surrounds the idea that queer studies and disability studies are interconnected in many ways that future scholars should look into to form their own theories.

3. Quotations:

-“In recent decades, sexual minorities have reclaimed “queer” as a badge of pride and a mark of resistance to regimes of the normal, mirroring the embrace of terms like “crip” (Dean, 143).

-“Power in modern society is exerted less through channels of regulation and prohibition than through those of normalization and rehabilitation” (Dean, 144).

-“Sex itself, in its effects on coherent selfhood, may be regarded as disabling” (Dean, 145).

4. Reflection:

The idea that most intrigued me from this reading was the assertion that queerness and heterosexuality aren’t opposing concepts in their basic form. The term “queer” has a much wider scope than just a descriptor of sexualities that are non-heterosexual, and instead battles the social standard of heteronormativity which primarily negatives influences the lives of everyone regardless of sexuality and gender. Being a queer person myself, for a long time I was uncertain of whether or not to accept the label because of its negative origins. However, this way of viewing the term is very unifying and inspiring to me.

I also really liked Dean’s emphasis on the idea that these theories are still being expanded and each scholar he referenced has influenced the minds of those involved in the communities, and the other scholars who develop their own theories based off of prior theorists work. It really emphasized that this ideas are built by living, breathing groups of people who want to make the world better both for themselves and the wider culture in relation to the structures that oppress them.

RAB O’Toole Reflection

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  1. Title and Author: 

“Fading Scars: My Queer Disability History” by Corbett Joan O’Toole

  1. Summary:

O’Toole begins their piece first with the statement, “I love being disabled.” They explain that this statement is something most people don’t hear outside of disability circles because nondisabled people have a tendency to think of disabled people only in terms of “Sickness, diagnosis, and aberration.” They then brings up an anecdote from when they were a part of a women’s conference of a progressive national organization where chose small topics, O’Toole’s being disability. The women put up three signs, “Disabled,” “Nondisabled,” and “Not Sure.” Every single of the women who placed themselves in the “Not Sure” category could have easily been considered disabled, but were too “isolated in their own worlds… and working intensely to hide the fact of their disabilities from the people around them.

The section on isolation from others with disabilities nicely transitions into understanding how to have a successful life as a disabled person. O’Toole references research that says that support from peers and resourcefulness are the most important things a disabled person can have in order to live fulfilling lives, because the majority of people with permanent disabilities face enormous social and economic barriers.” Next O’Toole describes the ways societal views on people with disability affect their everyday lives in terms of lack of representation. They state that, “The current U.S. media representations of disabled bodyminds demonstrate a profound failure of imagination.” The messages surrounding disabled people in popular culture are simplistic and easy to swallow, and confirm negative biases about those with disabilities.

When disabilities are seen as primarily a bad thing that parents should test for so they can abort “abnormalities,” the numbers of people with say, Down’s Syndrome decrease. O’Toole takes issue with this because they know and have enjoyed the company of people with Down’s before and absolutely doesn’t believe the world would have been better if they hadn’t been born.” They uses the example of how changes have been made in the treatment of people with Down’s Syndrome and how when once they were routinely institutionalized, they are now treated with more human respect in our culture and are more able to lead rewarding lives. 

Next O’Toole goes into the idea that “normal” isn’t real, and shouldn’t be something that we strive to emulate, especially when it leads to ableism. They says that, “a society that leans toward “normal” creates significant disenfranchisement for everyone who is ‘not normal.’” Part of the issue with the desire for normalcy is the implication that competency is tied to it. Disabled people are routinely assumed to have less competence in various areas than they really do, and are forced into educational tracks that they don’t belong in because incompetence is seen as an overarching label for disabled people despite the variety of disabilities that exist in the world. They states that presuming incompetence leads to fewer disabled people being hired in nondisabled work environments because bosses assume they will not be able to effectively do their jobs despite little to no evidence of that idea. 

  1. Quotes:
  • “For many of us, the reality of being disabled, the way our bodyminds function, is cause for celebration. (O’Toole, 13-14).”
  • “The forty women who joined the “Not Sure” group were all women that Marj and I would easily consider to be disabled (O’Toole, 14).”
  • “Disabled people who are connected through disability circles have a much higher quality of life.’9‘ Notice that I did not say that they have fewer impairments. Their quality of life goes up because, often for the first time, they are surrounded by people who see their wholeness, in contrast to the medical system that primarily sees their brokenness” (O’Toole, iy).
  • “All bodyminds are on a continuum. At different points in our lives, we have more and less function and move closer or further from the “normal” end of the spectrum” (O’Toole, ig).
  1. Personal Reflection:

The most important message I took away from this reading was the idea that although it takes creativity to live a rewarding life with disabilities, that doesn’t mean that a life without disabilities is inherently better, in fact, “You get proud by practicing,” (Hershey, 14). I also really like how O’Toole described the example of the women’s conference and how very few of the disabled women were willing to describe themselves as such due to a variety of factors, the main one being shame. It seems that if were are able to eliminate the origins of this shame, a lot of people would be able to access the resources they need instead of being forced to deal with their difficulties by themselves. 

Reversing the “Compassionate” Dystrophication of Personhood

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“The Kids Are Alright” is a short documentary exposing the incredible level of disrespect people with Muscular Dystrophy have faced from Jerry Lewis and the Labor Day Telethon put on by the Muscular Dystrophy Association. When the narrator first speaks, we see an image of him as a young poster child for the association, smiling from his wheelchair as Jerry Lewis hands him a piece of birthday cake. Flashing forward forty years later we see the narrator once again at an MDA event, one was he was not invited to. This time, him and other former poster children are protesting the event and all that it stands for as a group self-titled “Jerry’s Orphans”, passionately shouting, “Piss On Pity!”

Throughout this documentary the narrator dives into the specific actions and processes involved with the telethon that directly contradict the needs of those with Muscular Dystrophy. When he was a child, the narrator was featured on these televised events as a way for the foundation to pull at the heartstrings of those watching from home. They describe these children as trapped in their wheelchairs; a collection of poor little angels that may only be cured if people donate enough money to the foundation. However, as the story develops it becomes clear from the narrator’s account as well as those of the other former poster children that by focusing the telethon’s message on the goal to find a cure and make money for those involved in the association, the actual individuals who need accommodations such as wheelchairs, care-givers, ramps, etc., are often left out of the conversation, and therefore their needs are continuously unmet by the people who claim to care the most.

The issue of accommodations being provided to those who need them isn’t the only issue though. The narrator also makes the point multiple times that one of the most important things people can do to support those with disabilities is to refuse to pity them. Humans deserve to be treated with humanity. The narrator reads to the audience a quote from a piece written by Jerry Lewis that was featured on the cover of the 1990 Edition of Parade Magazine, where Lewis imagines what it would be like to suffer from Muscular Dystrophy and describes the people affected as only existing as “half a person,” who can only experience “half a life” because of the disability. The narrator points out that this level of disrespect towards the community Lewis attempts to represent is the most “unbelievably outrageous and patronizing piece about disability” that he had ever read in his life. He also goes on to express that this mindset affects the interactions disabled people have with the general public with a story about getting coffee one morning and a man on the streets assumed that the narrator was begging for money, simply because he was disabled and holding a cup on a street corner as he waited for the light to change.

As a documentary, “The Kids Are Alright” encapsulates the often invisible and purposeful disconnect between activists and the people they supposedly represent. Every year the narrator and the other members of “Jerry’s Orphans” attempted to protest the Telethon after the first, not only were attempts made to bar their entry, but the police were called to remove them each time, as the members tried to explain to the event attendees and supporters that their actions were detrimental to the Muscular Dystrophy community. When the narrator chose to name the documentary “The Kids Are Alright,” not only was he commenting on how the poster children deserve to exist as children without the condescending experience of being pitied for their existence, but he was also commenting on how Lewis and the Muscular Dystrophy Association chose to forget about the child once they grew up. Only the children are seen as good enough for viewers of the telethon to fight for with their pocketbooks, despite the number of adults who still need and deserve to receive accommodations without their personhood coming under attack.

This documentary highlights the problem of “compassionate” people who refuse to unplug their ears to the voices of the people have the human right to speak about their experiences. I found that the main message the narrator wanted to impress upon the viewers in “The Kids Are Alright,” is that despite the dehumanization, disabled people will never stop being fully human, and will not stop their important self-advocacy until the world understands that truth and acts in accordance. I would like to rate the documentary a full 5 out of 5, however I’m going to give it a 4, only because I wish it had been far longer and included the stories of the other poster children that made up “Jerry’s Orphans” explored in depth just as the main narrator’s experience was.