Month: November 2021

The Necessity of #DisabledAndCute

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“Nurturing Black Disabled Joy” by Keah Brown

Summary:

This piece begins with the author Keah Brown explaining how the book she wrote “The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me” elicited far more negatives reactions than it was due, as a book about hope, inclusion, equal rights, and joy. She states that most of the people who sent her hate mail were people who were mad that the story was about someone whom they felt they couldn’t relate to as white people, even if they too were disabled. Brown details that media typically portrays disabled people as white men instead of people with intersectional identities and the hashtag she created, #DisabledAndCute, was a way for her to show her joy as someone who is a black, disabled woman. She says that she doesn’t expect herself or anyone else to always be happy, but knows that finding “small pockets of joy” as often as possible.

Quotes:

“When I created #DisabledAndCute in 2017, I did so to capture a moment, a moment of trust in myself to keep choosing joy every single day” (Wong, 118).

“I was once a very self-deprecating and angry person who scoffed at the idea of happiness and believed that I would die before I ever saw a day where I felt excited at the prospect of being alive” (Wong, 119).

Reflection:

I had never heard of the hashtag #DisabledAndCute until I read this piece and so I looked it up online and really enjoyed reading more Keah Brown’s intentions with the hashtag. I read a quote where she explains that oftentimes when disabled people are called cute, it is from nondisabled people who are infantilizing people with disabilities, whether they mean to or not. By calling herself cute, she is working to take ownership of how people with disabilities are represented, because its giving a platform for people to represent themselves rather than other people doing it. A quote from this reading I really appreciated was her words on how she used to be a very self-deprecating and angry person but realized one day that that sort of mentality and outlook on life wasn’t worth it and started redirecting her negative thoughts into productive and positive ones. I liked this because I think its very true that in order to stop utilizing a negative mentality, a person has to use that energy towards something else or else they can never break out of the cycle.

Brown, Keah, “Nurturing Black Disabled Joy”

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Disability Visibility: First-Person Stories from The Twenty-First Century, edited by Alice Wong, Vintage, June30th, 2020. (pp. 117-120)

Summary:

Brown starts by explaining her relationship with joy and how society expects her relationship to joy to be. She explains that disabled people are expected to not feel positive emotion, making anytime she experience joy much more profound. Brown is a disabled woman of color, a person often excluded from representations of disability. She discusses how she aims to decentralize the notions of heterosexuality and whiteness that are often associated with the disabled community. Sometimes her efforts such as the viral hashtag, #DisabledandCute, have been criticized as inspiration porn. Brown maintains that her efforts good outweighs the harm as they make POC and LGBTQ+ members of the disability community more visible. Basically, she is validating her and others’ existences in a society that had been actively erasing tor ignoring them. She concludes by acknowledging that she has not always being able to feel joy, but she has had to fight to feel her current joy.

Quotes:

“So my joy –the joy of professional and personal wins, of pop culture and books, of expressing platonic love out loud — is revolutionary in a body like mine.” Pp.117

“Instead, they think of cis white male wheelchair users who hate themselves, because that is so often the pop culture depicts us.” Pp.118

“I championed the act of effort and patience with myself by forcing myself to reroute negative thoughts with positive ones. Instead of saying what I hated about myself, I spoke aloud what I liked about myself.” Pp.119

Reflection:

Brown efforts are very admirable. I think finding joy is something a lot of people are struggling with. I really like that she chose to continue pushing forward with her projects despite criticism. This sounds very basic, but it takes a strong person to do this, even without the added social and cultural pressures of being part of multiple minorities. Brown is focusing mostly on the positives which I consider a smart move, when rallying for change. It keeps those involved in the movement engaged and energized. She does not promote ignorance of any negative aspects of the disabled community and disabled rights movement which allow a healthy movement to flourish. It is important to be reflective but hopeful when advocating for social change.

Thornton Sr., Ricardo T., “We Can’t Go Back”

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Disability Visibility: First-Person Stories from The Twenty-First Century, edited by Alice Wong, Vintage, June30th, 2020. (pp. 85-89)

Summary:

Ricardo Thornton begins by introducing himself and his purpose, to represent the ninety-two thousand institutionalized people with intellectual disabilities. Thornton explains that he grew up in institutions with a special focus on Forest Haven, an institution where his siblings and wife were placed. He takes the time to explain how the institution residents were controlled and denied independence. For example, he was never told his siblings were in the same facility or that he had siblings while in Forest Haven. Thornton was one of the first people to be allowed to leave Forest Haven. He remarks on the surrounding community’s attitude toward the former Forest Haven residents, unwelcoming and hostile. Thornton moved into a group home where he began dating his wife and worked to establish himself. Thornton reflects upon doubt and discouragement he received throughout his life, most people believing he could not be a functional member of society. He states this is the reason he advocates for institutionalized people; He wants to give them a voice because he knows that they are denied their own voices. He acknowledges the changes that have been made and presses that we cannot go back to institutional structures of the past. He concludes that segregating people based upon intellectual abilities is only harmful and the only reason he stands before the audience is because people believed in his potential. He leaves the audience with the task of protecting and giving the people still in institutions the chance to grow.

Quotes:

“Segregating People is always bad; people never grow in [institutions]and are safer and happier in the community.” Pp.89

“We can’t go back to a time when people are moved against their will to places where they have n opportunities to learn, grow and contribute.” Pp.88

“…I didn’t get to think for myself. The staff thought for me and made all of my decisions.” Pp.85

Reflection:

This made me cry.

I am more familiar with intellectual disabilities than any other category of disability, so this speech hit a bit close to home. The interesting thing here is Thornton is not using any novel arguments. I have seen his main point hundreds of times before, but the fact that it needs to be made still is heartbreaking. While we as a culture/society have improved our awareness and treatment of mental differences, People like Thornton still need to fight to be seen as deserving of a life. Though He never explicitly stated this, I feel like the central message of this piece was “there is a difference between being alive and living”. Being alive is not enough. The person who is just being kept alive is being robbed of their person-hood and that is just a step away from killing them. Why is that okay?

Arntzen Sucks and It’s Zine Time

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Three years ago, I helped with the annual Global Health conference on Western’s campus. The theme was Criminalization of the Body, meaning we investigated why, how, and in what ways certain demographics experience marginalization of the body. One of the demographics we spent time on was the disabled community. Ironically, the conference was held in Arntzen Hall, arguably the most ableist building on campus. From there forward, I took notice of the potentially inequitable structures on campus, and I was appalled by what I noticed (that I don’t have to navigate in my bodymind).

For my project, I will be compiling a zine that elaborates on the ableist characteristics of Arntzen Hall. Arntzen Hall was built in the late 60s and still stands as one of the most trafficked buildings on campus. It houses the largest lecture hall on campus, making it a hub for intro classes. Arntzen Hall stands as an example of the discriminatory rhetoric of space at WWU. There are countless other examples that piece together a message for Western staff, students and visitors, and that message is, “if you don’t fulfill our constraining, ableist ideals, you are not welcome here.”  

The zine I am making will break down these institutionalized ideals and offer insight on rhetoric of space. Rhetoric of space is so important to me, personally. I find deep relation to the space I inhibit and value in the power of design. In class, I was struck by the chapter in Disability Visibility, The Beauty of Spaces Made by and for Disabled People. This chapter emphasized the importance of space and what it tells us. Space means so much more than just the architecture of a building the design of a sofa. It is atmospheric and transcendent. It is rhetorical. And for that reason, I will be looking at not only physical space, but educational and social/relational space as well.

My final product will be handmade! I will cut a piece of printer paper, fold it, and fill each page with nuggets of gold from my research. Because a zine can only hold so much information, I hope to write a short essay elaborating on my findings as well.

So far, I have done research and light sketching. I know the general format that my zine will take and am gathering the content. I spent some time researching rhetoric of space, the inequitable systems of education, and inclusive spaces. I recently went to Arntzen Hall and did some firsthand investigating. I recognize that my observations came from a singular place of ignorance. I can only gather the information I think to gather! I play a part in this research in a way that may prevent comprehensive data. I am working through that as I continue to gather data. In a true research project, I think I would hope to include perspectives of folks with disabilities, but because of timing and my current capacity to take on more work, I will have to settle with my perspective only.

Moving forward, I will finish compiling research and piecing together what I learn reading with what I experience in Arntzen Hall. I will be concise in my summary and explain my findings through storytelling and images on the 8 allotted pages of a typical zine.  

Current summary of zine: 

  • Page 1: Title Page – Image of Arntzen Hall 
  • Page 2: Intro to Arntzen, Rhetorical Space, and Disability Studies 
  • Page 3: Outline summary of what will be included 
  • Page 4: Breakdown of physical space 
  • Page 5: Breakdown of intellectual space 
  • Page 6: Breakdown of social/relational space 
  • Page 7: Reinforce what was learned  
  • Page 8: Closing notes and sources 

Beyond These Walls

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“We Can’t Go Back” by Ricardo T. Thornton Sr.

Summary: Thornton begins with introductions and starts his speech with his early history of living in an institution for people with intellectual disabilities. He talks about how knowledge of his family who lived in the same institution were kept from him and the death of his sister. He talks about leaving the institution and society’s perception of him living in a group home, then to how he started his own family. He continues speaking about how people with disabilities deserve opportunities to learn and grow and his family’s work experiences. Thornton talks about the necessity for community and support, and how people with disabilities have great potential when they are supported. Thornton implores his audience to support people with disabilities and help them learn and grow. He concludes by arguing against segregation and institutions, and says that we need to move forward with our communities, not backward.

Quotes:

“People need to have high expectations for people with disabilities because then they’ll give them opportunities to learn and grow” (87).

“I believe that people can do anything if they’re given the opportunity and support” (88).

Reflection:

I think Thornton uses a really concise speech that works well to ask an audience to support and care for people. It is tragic that as a society for so many decades we had (and continue) to segregate people in many different ways. The institution is just one way of segregating the disabled community from the non-disabled community. I was happy to hear Thornton’s story of success but I know that the reality is so many people in institutions don’t get the chances that he did. Society has collectively decided that the best way to “support” people with disabilities is to put them in special places with people who work to support them. And on paper, that sounds great. But in reality, it creates even more barriers to the human experience by making disabled people feel inhuman. Having all choice and opportunity stripped from you because of your ability or lack thereof is inhumane. I agree with Thornton’s plea to end institutional living and instead focus on community support. I think one of the best ways to do that is through education and the sharing of stories. We cannot move forward as a community until we hear the voices of everyone in the community. And it is equally as important for us to work together to create a better opportunity for the people around us, giving them support and breaking down barriers, choosing to lift each other up instead.

The New Joy

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“Nurturing Black Disabled Joy” by Keah Brown

Summary: First Brown talks about how disabled communities are typically barred from experiencing joy or hope. Brown is unapologetic about her joy and proceeds to talk about the aftermath of publishing her first book. Brown counters the arguments against her book through realizing that the reason the readers were upset was because the book was not centered on their experience. She talks about starting her movement #DisabledAndCute and how it enabled her to start living life unapologetically. Brown continues to talk about how she searches for joy and hope and ends with sharing her joy with the world and commitment to living her life fully.

Quotes: “So I live as unapologetically as I can each day- for myself, of course, but also for those who will come up after me, who will walk through the doors I hope to break down” (118).

“On those days, it’s important not to mourn the lack of joy but to remember how it feels, to remember that to feel at all is one of the greatest gifts we have in life” (119).

Reflection:

I think that Brown’s essay is a great example of how transformative joy and hope can be. I think for a lot of people, disabled people especially, there can be a compulsion to cling to the dreary. As someone with mental illness, I know that there were plenty of times in my life when I said, “I am too depressed to be happy”. And the moments that I did feel happiness later became twisted because my brain inserted facts that did not exist, marring my perception of whatever had just made me happy. But the moment that joy is sought after and accepted is transformative. Not only can it help your own mental health, but it can help the mental health around others too. It is important to pursue joy in your own life, not only because you deserve it but also because you deserve to share your joy with others. Joy and hope are contagious, and recognizing joy in others creates a sense of belonging and hope for a positive future. You can recognize when things are difficult or painful, you can validate those feelings as they come. But it is important to train yourself to understand that those feelings won’t last forever. That it is okay, even desirable, to have hope for the joy that is to come. I know that the concept helped pull me out of some dark spaces, and I have also used my search for joy to help fuel others, recognizing that living is a community process, and we all help each other one step at a time.

Major Project Feelings & Frustrations

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Reminder: 

My project is centered around the idea of relationships in/across disability. To explore this, to educate myself and others I am using mainly anecdotal pieces for perspective. Through this journey I hope to re-direct people’s minds when they think of disability or how they treat a loved one.I’m going to have main sections that will have subsections of information I find relevant for each, some might be longer than others for personal interest sake. The main sections will be Family Relationships, Romantic, Friendships, and a section on Sex/Sexuality (relationship with self). I would like to include mental and physical disabilities since I’m interested in both. Subsections might include a chosen theoretical approach to look at the subject from, important concepts not talked about enough, and why it matters to know the information or what it means. I intend to do a slideshow presentation with different complimentary embedded media forms (I.e., pictures, videos, music).  

Progress: 

So far, I have some resources I’m considering using for information and stories to cite. Additionally, I might try to find scholarly articles with certain statistics but I don’t want this to be heavy research-based and like a story-telling approach more.  

Sexuality/Sex: 

Vice’s Sexual Healing: Inside the World of Medically Assisted Sex 

Robert McRuer’s Sex and Disability  

Alex Taylor’s blog piece titled Disability and Dating: ‘Why do people think I’m my boyfriends’s carer’ 

https://www.easterseals.com/who-we-are/history/  Easterseals Blog 

Romantic: 

Alex Taylor’s blog piece titled Disability and Dating: ‘Why do people think I’m my boyfriends’s carer’ 

https://www.easterseals.com/who-we-are/history/  Easterseals Blog 

*For both Family & Friendship I am trying to decide between a few YouTube videos/interviews to take from but haven’t made a final decision yet* 

Worries/Questions- 

One main concern is how I go about sharing the information and what I share. I want to be able to recognize my status of privilege here, and that I am not “studying” a group of people/ a community I am not a part of. With that in mind, I thought taking from certain approaches or a main one (DS and rhetorical lens as we’ve been learning about) would help reduce that impression and everything stays respectful and educational. I want this to feel insightful and interesting enough to answer certain questions while posing others. I’m having a hard time with resources that I think are solid but I also find it interesting the results I’m getting as they are telling themselves. I’m debating reflecting on it in the presentation, how ignorant some related searches were or how hurtful titles were. I believe the media will be the easiest part to incorporate and the most fun for this though which is exciting.  

The Eyes of the Monster

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My final project is an academic analysis of monstrosity and disability. Initially I was planning on looking at the history of the monster through a disability lens, but instead I have decided to take 3 forms of media and analyze how they use disability to portray monstrosity. Specifically, I am looking at Frankenstein, The Phantom of the Opera musical and the children’s book, Wonder.

As of today, I am a little less than 3000 words into this essay which aims to be about 4000 words, or 15-20 pages after formatting and citations. My goal is to get the final 1000 words before this coming Monday, and then work on reformatting and adding additional citations as needed. I am using the theoretical framework of the “recognition” (and by proxy, misrecognition) theory in politics and using it under a disability framework as well as work from Rosemarie Garland-Thomson and her work with freaks, staring, and disability. I really like the theory of misrecognition, as it gives power to the viewed and talks about the nature of bias and power dynamics in literature and media.

Right now my biggest challenge is getting everything to sound academic. My ultimate goal is to get this completed to submit for graduate application. I am struggling to get all of my analysis to sound coherent, but I do have quite a bit of analysis complete, especially for The Phantom of the Opera.

This project is showing me that there are a lot more cases of monsters as othering for literature and beyond. I really struggled narrowing down my sources and what works I wanted to focus on. It gives me hope if I end up pursuing this as a doctorate thesis, I have a lot of works to choose from and even more frameworks to view them through.

My questions would be:

How do you view facial deformity? Do you have any references of monsters in literature that act as characters of disability?

Some work that I have already completed, I will spare you 3000 words worth of work. So here is a bulleted example of some analysis that I am looking at for my work.

This is from my introduction:

When one thinks of the monster as a deformed body or a portent of misfortune, it draws connections to the Victorian entertainment of the Freak Show. The Freak Show was often put on as a traveling expedition featuring monsters and freaks of nature, creatures who were not meant to exist but walk among the populace. The “beings” featured in these Freak Shows were often people with visible, physical disabilities. Ranging from dwarfism, to limb difference, to the “stretchy skin” side effects of Ehlers Danlos Syndrome, the majority of the attractions of the freak show were not monsters or freaks, but in fact people with disabilities. These shows were invitations to stare at the other, creating a barrier between the “normal” audience and the abnormal, “monstrous” freaks that lay spectacle. 

This is from the analysis of the Phantom of the Opera:

  1. The Phantom is accustomed to such reactions, later even mentioning that his own mother reacted in a similar fashion. From birth the Phantom is misrecognized as a monster, a creature, a phantom. Phantom is defined as a ghost or a figment of the imagination, simulating that because of Erik’s disability, he isn’t even granted the semblance of humanity’s existence and is instead immediately recognized as a monster. 
  2. Throughout the opera, the phantom is given metaphors of being “of the night” which can be understood as both being hidden, away from the light, and the only things that happen in such dark places are acts of evil. So by proxy, the phantom is evil through his existence and his disability.

If you want to see more, I have tons. Let me know!

Where I’m At So Far

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My project is about online disability communities and how memes are used to create rhetoric and foster relatability and understanding. I also want to look into how online crip space and anonymity play a part in these communities. I want to present the information through a digital form, either through a text-image based post much like the posts I’m seeing in my research, or through a video essay, where I would use a more conversation voice in my writing. I would be writing a script instead of an essay.

With some of my research so far, I’ve found out a lot of things I didn’t really consider. A really interesting part of this project that I found out was that there seems to be two spheres of communities in these spaces. There are a lot of posts that are informational, that are more oriented towards non-disabled people, or people who are new to the online community. They could be helpful to newly-disabled people or people who need information on how to support their disabled friends. The second sphere is more focused towards people in the community. It is founded on the basis that the information found in the first sphere is already known fairly in depth. This foundation is used to have more nuanced discussions, share more specific experiences, and where a lot of the memes are found. For instance, the migraine memes use words like, “brain fog” and autism memes discuss “masking” without feeling the need to explain these words because it is expected of the audience to already be familiar with these terms — usually the audience is people within these communities. There is a generalized knowledge based on common experiences that is used to create relatability and quickly convey a lot of rhetoric. It is the context of this rhetoric that allows it to take shape. I wasn’t all that aware of these two spheres, or at least I didn’t really notice them until I was doing research for this project.

The main struggles I’m facing is choosing if I do a video essay or not, and also the social media aspects of this assignment itself. While it is enjoyable to see these online communities, I also find social media really draining and don’t really use it personally. Depending on what app I use, there are drastically different vibes and a lot of posts could be discussing really bad negative experiences. Which is not to take away from the actuality of these experiences, but a lot of apps are arithmetically going to be focusing on the most extreme or polarizing posts, so often it is difficult to find posts about pride without them being touched by negativity. There is also the immediate nature of social media that is to be considered, in-depth discussion could be harder to come across on instagram and twitter, because the format of the apps are limited. Reddit is more likely to have long posts, and things like podcasts and video essays are more in-depth as well.

I’m going to show to memes in class though. If I can.

Sketch of Major Project: Disabled Representation in Charity Foundations

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My main focus for the major project is an analysis on how charities and fundraisers have chosen and currently choose to represent people with disabilities in their efforts to acquire funds that would provide them with accommodations and services. This essay will focus specific attention how sponsors, non-profit directors, and the general public respond to different organizations and their success rate compared to the levels of ableism and inspiration porn forced upon the people utilizing these organizations. A source I’m going to utilize is the short documentary “The Kids Are Alright” paying close attention to how the Muscular Dystrophy Association set the precedent for charities for disabled people and how it has influenced organization operations today. A couple of these foundations I’m looking into include Smile Train and Autism Speaks because I’ve heard a lot of negative things about them. Another foundation I will focus on comparing to these is GoFundMe because it functions very differently than traditional charities and brought a new set of issues to the table in how people are able to gain the support they need.

So far my project is going well in that I’ve collected most of the sources I’m going to draw from other than images taken from the sites. So I am focused on working on my arguments in relation to the information and bringing in images as needed. Right now the thing I’m trying to figure out is how to best organize my ideas. I generally know that I want to start off talking about “The Kids Are Alright” and reference one or more of the readings we’ve gone over in class in order to qualify some arguments. Then perhaps going off of that framework I will delve into the specific ways the other foundations poorly represent people with disabilities and/or how the organizations take advantage of those they represent, though I’ll have to do more research before getting into those issues. I’m having trouble organizing our past readings in my head, are there any specific ones related to representation that anyone thinks would be useful for me to utilize in my arguments before I go through all of them again in depth?