Author: DellFrog

Facing the Monster: An Analysis of Disability and Misrecognition in Literature

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My name is Tommie McPhetridge and I am the author of “Facing the Monster: An Analysis of Disability and Misrecognition in Literature”. I drafted this essay because I am inspired by the monster narratives that are pervasive in modern literature. Specifically, I think that it is fascinating how monsters have changed from creatures of doom to beings of hope and possibility. I wanted to do further study into the nature of monstrosity, choosing disability studies to narrow my focus of understanding monsters and disability in literature. Throughout this project, I struggled to narrow my field of study to just two representations in literature. At the beginning, I had over thirty representations of monsters and disability that I wanted to look into. In the end, I chose Frankenstein due to its fundamental status as monster literature and Wonder to be its foil. There is not a lot of commentary about disability in children’s literature and I wanted to be part of the start of that path of research. Finding theories that would support my analysis of these novels was simple, I started looking at theories that touched on identity and otherness in society. Once I read about recognition theory and Rosemarie Garland-Thomson’s studies on freaks and disability, I knew that they would be perfect for this project. I hope that this project will remain a pseudo-living document that I can expand upon in the future, as I believe there is a lot more to say about identity, disability, and monstrosity in media.

The project itself is linked below and requires a download due to the text length and formatting.

Facing-the-MonsterDownload

A Journey in Theory

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When I signed up for a class about “Disability Rhetoric” I was apprehensive. I was interested in learning more about disability, but I had never encountered rhetoric. I remember searching the definition of rhetoric every day for the first two weeks of class. Once I moved past my fear of rhetoric it was time to tackle the concept of disability. Our first assignment with “The Kids Are Alright” immediately challenged my perceptions of disability, forcing me to confront the overcoming and sympathy (read: pity) narratives that had been taught to me. One of the earliest quotes from my journal is in response to an article by Simi Linton. “But we have failed as a society by expecting abnormality and inability of people who are disabled.” While I still believe this is true in some respects, I don’t think I gave enough credit to the disability community. In today’s world, disability is far more visible than it was even as I was growing up, in large part due to the activism around making the world more accessible and sharing the narratives of people with disabilities. I think this also calls into question definitions of normal and ability, ones that I hadn’t considered at the time of writing that line.

Surrounding the conversation of Disability Visibility as a whole: “It is the way of understanding more about the world and how empathy is the answer when you have more knowledge about the vastness of diversity and the vastness of disability.” I had never encountered the narratives of people in Disability Visibility, and I had never encountered the drastic actions that we saw present in disability activism stories like in Crip Camp. The narratives we encountered were not all sunshine and roses. I don’t like reading sad stories, but there is a difference between a sad story and a provoking narrative that I encountered in this course. Stories like “Unspeakable Conversations” and The Kids Are Alright aren’t necessarily triumphant stories, but they aren’t sad stories either. They are stories that show multi-faceted people experiencing life. And it was refreshing to get a narrative that went beyond my expectations unapologetically. These authors weren’t writing to pander to the nondisabled community, they were writing for themselves.

I hadn’t really encountered a lot of theory outside of educational theory, and seeing disability theories and applying them to literature and media has helped me develop a greater sense of critical analysis. Being able to develop these skills and knowledge has been instrumental in shaping the path of my future. I have learned new perspectives from my peers and been revived in my hope for teaching. I think this quote from October summarizes my thoughts of the class pretty well. “It is where people begin to learn and break free of prior discourses and develop new concepts in conjunction with other like minded people.” I could not be more grateful for the knowledge, theory, and connections I have learned in this class. It also showed me that I can bust out writing much more confidently than I had expected. I am proud of where I have come and I look forward to how I can use this experience in my future.

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.

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!

A Major Proposal Monster

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  1. Title: The “Monster” Within: An Analysis of Disability as “Monstrous” in Literature
  2. Central Question: In early literature, monsters or monstrous figures were often caricatures of disability. These caricatures led to generalizations of disability that when replicated led to widespread misunderstandings of how disability is experienced and perceived. How did early literature characterize disability and what are the modern repercussions?
  3. Product Design: I will be creating the beginnings of a thesis essay, estimating 15-20 pages of research and analysis of literary works and modern interpretations. Many of the literary works will come as a result of the analysis portions, provided by the Disability Studies Quarterly journal and academic essays published by universities.
  4. Production Plan: This product will be a result of hours of research and culminating analysis which will have to be done over a long stretch of time. I plan to meet with the professor on either the 10th or the 17th to present initial findings and the general structure of the essay. The work-in-progress will hopefully be the second or third draft of the thesis, with only minor adjustments and citations to be added.

Proposed Schedule:

November Week 1: Outline and First Draft of Sources

November Week 2: First Draft of Content -perfect citations

November Week 3: Second Draft of Content: After meeting with professor and finalizing Chicago Style sources at the RWS

November Week 4: Third Draft and Final Edits

  1. Consultation: I will hopefully be in contact during several points of the essay, but mostly using the professor as a touchstone of major ideas. I tend to get carried away with either too much research or too much analysis, so getting feedback on whether I am finding a good balance will be helpful. This will likely come after the first draft of the essay.

Special Questions: Thinking of formatting of research and analysis, I think that it is best to go via topic vs. via source (ie: multiple sources on the topic of mobile disability vs. analyzing Shakespeare, then Hugo, then Wordsworth, etc.) Would this be preferable for an academic paper? Is it considered too “passe” if my “modern perceptions of disability” look at how Disney has taken literary stereotypes and morphed them further? Or should I just be looking at how the stereotypes are repeated in modern literature?

  1. Citations: I have about 20 gathered right now, not that I will use all of them. But these are some I have come across.

Mary Shelley’s Frankenstein, Disability, and the Injustice of Misrecognition https://dsq-sds.org/article/view/7109

Aesthetic Traces in Unlikely Places: Re-visioning the Freak in 19th-Century American Photography https://dsq-sds.org/article/view/613 

Disabling Imagery and the Media: An Exploration of the Principles for Media Representations of Disabled People https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/Barnes-disabling-imagery.pdf 

Disabled Literature—Disabled Individuals in American Literature: Reflecting Culture(s) https://scholarspace.manoa.hawaii.edu/bitstream/10125/58432/1/574.pdf 

To Grieving Parents: “Don’t Mourn for Us”

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“Don’t Mourn for Us” by Jim Sinclair

Sinclair begins their letter to parents by calling out the “trauma” that parents feel upon receiving a diagnosis that their child is autistic. They define autism as a way of being, and wishing for your child to not be autistic is akin to wishing for a different child. Then they talk about parents learning a new way to communicate with their children that is often outside of their expectations. Sinclair then talks about the grieving process that parents go through upon diagnosis, relating the grieving not to the loss of their child to autism, but the loss of their dreams of a neurotypical child. They tell parents instead of being sad at their child’s condition, they should be sad about the world that fights against their existence. Sinclair ends the letter with telling parents to look at their children and assist them in the world around them, help them where they can and fight for better living conditions for people with autism.

Quotes:

“What it comes down to is that you expected something that was tremendously important to you, and you
looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it–
and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to
hasn’t happened. It isn’t going to happen. No matter how many other, normal children you have, nothing will
change the fact that this time, the child you waited and hoped and planned and dreamed for didn’t arrive” (4).

“This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t
know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents
of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it.
And because this alien child happened to drop into my life, that job is mine if I want it” (4-5)

Analysis:

Sinclair is clearly responding to the immense amount of parents who exaggerate the grief over their child with autism, the ones who champion for cures or attend autism support groups because their “lives were ruined by autism”. It seems to me that they drafted this letter as a response to those parents, and to new parents, to let them know that while their grief is real, autism is not a death sentence nor an impenetrable wall. Here they are speaking specifically to parents of children with autism, with the hopes of giving them insight to the autistic experience of their exaggerated grief. Sinclair is speaking within the realm of someone with autism, someone who has worked within the autism community, and someone who likely has been the recipient of this exaggerated grief.

Thinking about this article, I think that they do a great job at calling out parents for their traumatizing behavior, saying that the “trauma” that parents experience for their kids is valid, but they have to be careful not to re-traumatize their own children with their grief. Part of why I am so adamant that they are speaking to exaggerating parents is the heavy emphasis that they put on the idea that the “normal” child never arrived. In the following quote, Sinclair discusses that the parents have a loss of a dream child that they could relate to and that would understand them fully.

“What it comes down to is that you expected something that was tremendously important to you, and you
looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it–
and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to
hasn’t happened. It isn’t going to happen. No matter how many other, normal children you have, nothing will
change the fact that this time, the child you waited and hoped and planned and dreamed for didn’t arrive” (4).

Parents, with reasonable expectations of the birth of their child, should have a level of expecting their child to be different in some way. I know that in my family’s experience, my sister and her husband were fully of the mind that no matter what child resulted from the pregnancy, there would be happiness and joy at the life that they could provide for the child. We talked about the prospect for disability with my nephew, and are still watching as he grows to see what kind of child he will be. But regardless, he is their dream child because he is *theirs*.

That is to say that I do take issue with the following quote toward the end of the letter.

“This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t
know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents
of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it.
And because this alien child happened to drop into my life, that job is mine if I want it” (4-5).

I take issue with this quote because Sinclair is equating children with autism to aliens who just “land in (your) life by accident”. While yes, some pregnancies can be accidents, my nephew included, it is very clear that you are having a child. The child who is born to you is not an accident, regardless of however they experience life. I know that Sinclair was trying to make the point that for a parent, the way that their child will learn and experience the world will be foreign to them, but to me alien provides connotations of “unknowable”. And saying that you don’t know who the child *is*? They’re your child, plain and simple. Sure we don’t know what they will become, but that is true of every child. On top of this, I do not agree with calling a child, autistic or not, with the marker of “it”. Color me from flashbacks of reading “A Child Called It”, but if you must, at the very least name the child with “they/them” pronouns.

Perhaps I just have strong feelings towards parenting and the raising of children, but I definitely struggle to empathize with parents who see their own child as “other” or “alien”. Do you have to adapt to a whole new learning style on behalf of your child? Yes, but a similar notion can be said of every child.

Away from my parenting rant, I do think that this letter would be helpful to parents with children who are autistic. I think it is a validation of their feelings of loss, but also a call to action to not project their grief onto their child. It certainly sends a powerful message that doesn’t use flowery language to distort its purpose.

On Living: Unspeakable Conversations

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cw: infanticide, assisted suicide

“Unspeakable Conversations” by Harriet McBryde Johnson

Johnson begins her essay talking about Peter Singer, the man who wants her, and disabled people like her, to die instead of being born. She briefly mentions that she accepted a conference where he invited her to speak at and how she is often the token disability advocate. She then addresses that there are several questions that people tend to ask her, which follows into the expanded answer of said questions. Johnson names her disability as muscle-wasting disease and talks about the way that she looks and the questions she gets on the street, to how she first meets Peter Singer as a member of Not Dead Yet, a disability rights group actively fighting Singer’s ideas. Johnson attends his panel on infanticide and assisted suicide, refuting his points and finding him infuriating but loquacious. Their debate turns into letters, which eventually turns into an invitation to speak at Princeton. With hesitancy, Johnson accepts and sets the travel plans, which go awry when the airport breaks her wheelchair. With a fixed wheelchair and a short night of sleep, Johnson arrives at Princeton and begins her lecture to Singer’s students. After answering their questions, Singer asks for a walk where they discuss more of Johnson’s points of view. This leads to the evening faculty discussion where they discuss assisted suicide and Johnson does her best to offer commentary on philosophical ideas. Returned home, she has received a book from Singer and recounts the episode to friends and colleagues. While some are satisfied, others find fault that she would engage in civil conversation with him. She later questions her internal motives for conversing with him and the morality of his argument which concludes with her vision for the future.

Quotes:

“But that’s the way it always works, isn’t it? They’re always animals or vermin or chattel goods. Objects, not persons. He’s repackaging some old ideas. Making them acceptable” (24).

“But even if I’m a token, I won’t have to act like one… It’s an old trick, and I’ve laid myself wide open” (11).

“‘You kind of like the monster, don’t you?’…’Yeah, in a way. And he’s not exactly a monster” (24).

Analysis:

Right off the bat, Johnson leads in with some heavy hitting commentary on a very disturbing topic, one that is a high topic of debate today. I confess that I do have my own opinions on these arguments but they are still largely being shaped by alternative points of view. But to start, Johnson is arguing for her right to exist as a disabled person, more specifically, her right to exist at all or to be killed as a child. “‘You kind of like the monster, don’t you?’…’Yeah, in a way. And he’s not exactly a monster” (24). Breaking down the quotes from the text, it is clear that Johnson has come across what many people encounter during these divergent topics, a human. I do not mean that to be funny or clever, but specifically in the context of how her sister conflated Singer’s humanness to the Nazis. That is the issue in these debate spheres. It would be so much easier if the opposition was a monster, someone clearly (perhaps visibly) evil and deadly. But the reality is that so many of the people who propagate these downright deadly and repulsive ideals are the people you pass by on the street, your doctor, your cashier, your coworker. In any other situation, talking with them and engaging is fine, pleasant even, but then they drop the bomb that they believe every person with a severe mental disability should be killed out of mercy. So the answer is both yes and no. Singer is not a monster because he is capable of kind acts, thoughtful conversation and living in good relationship with others. But he is clearly a monster to all people with disabilities, or anyone involved in the eugenics act.

“But that’s the way it always works, isn’t it? They’re always animals or vermin or chattel goods. Objects, not persons. He’s repackaging some old ideas. Making them acceptable” (24). And his argument is one we know well: they (insert identity here) don’t have rational thought or are so dependent that they can’t find true joy in their life, are they even capable of making their own decisions? Or giving the whole power to a family member or a medical system who has no say in the individual’s life choices. It is even worse when you consider the pretty packaging that so many people offer the monstrous point of view. Using relatable, modern terms, catchy slogans and professional lingo, it all sounds very palatable. Of course parents would rather not go into medical debt for a child who is disabled, of course parents would like to raise a happy, healthy baby. And if you had the opportunity to genetically alter the baby so they would not be disabled? Why not? But the issue is that these eugenics principles are being packaged with new wrapping paper to suit their methods. No matter what, they want to take the rights away from people with disabilities, never giving them a chance to live and decide how to live their own lives. People with these polarizing arguments are quick to humanize themselves and dehumanize others.

“But even if I’m a token, I won’t have to act like one… It’s an old trick, and I’ve laid myself wide open” (11). And we all fall into a similar trap as Johnson did. If we don’t engage in discussion at all, how will our voices and views be heard? In matters such as this, it is vital that the life point of view be heard and seen, not brushed aside. However, in engaging at all, you are letting the opposition know that their argument has some sort of ground, ground enough that you think you have to refute it. So how do we combat this? I think the larger question is, how do we fix society so that these aren’t even debates anymore? There is a lot to be done to our medical and community support systems for even the current lives to be at peace, let alone any future lives brought into the world. So in the meantime, while it is difficult to give these ideas a platform, I think we have to debate. Because even if in a debate we change one person’s mind in a room of fifty, that person can go and change another person’s mind. It is a chain reaction of knowledge sharing and empathy, one that will take a while. But first, we have to actually see disability today, acknowledge the people who are living every day, full and complete lives, and do our best to offer support where we can.

A Study in Progress: Moving and Growing Beyond

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Disability Studies: Or How to Not Repeat the Past

When I think about the core of disability studies, I think about the proper approach to studying history. We are meant to learn from the past and present in order to move forward, gaining a better understanding of the beauty of people’s lives and the mistakes we have made as a society. As such, I have decided to define disability studies thusly. Disability studies is an examination of the past and the present ways of understanding disability in order to create a more equitable and empathetic future. It is also a way of recording the history of the lived experiences of people with disabilities as a means of catharsis and visibility. Despite this definition, it is important for me to understand that disability studies are in flux and unlike concrete studies of other academic kinds. As a fairly recent topic of academic focus, there is much that we can learn from the world around us and the past we have experienced. However, what remains one of the most important pieces of disability studies to me is that we center the voices of people with disabilities. Both disabled academics and people who share their everyday experience outside of academia. We have to develop a compendium of knowledge around disability and the disabled experience before we can truly pinpoint a stable definition of disability studies.

Our understanding of disability as a society is still pretty primitive, given that as a whole society has chosen to oppress and suppress the stories of people with disabilities for centuries. Until we can see people with disabilities, and really see them, we will never have an equitable society. Similarly, Alice Wong says in the Intro of Disability Visibility, “Collectively, through our stories, our connections, and our actions, disabled people will continue to confront and transform the status quo” (“Disability Visibility”, Wong, xxii). Wong says that through our collective communities with people with disabilities, we can confront the norm that society has created as a means of pushing past it and developing something new. 

 Despite Nothing: Visibility, Community, and Redefinition

When considering the topics of community and redefining language, we first have to see and understand the core of the topics by recognizing what we know and what we understand. This is the core concept of visibility: being seen, understood, and listened to. Growing up, I could probably count on one hand the portrayals of disability that I saw or read in media. To this day, answering the question of how much disabled media I consume remains a small number. Between the lack of representation in publishing and on-screen, to the lack of conversations that we have in the everyday about disability, it remains a bit of a touchy subject with a lot of people. Some people avoid discussing disability because they fear offending someone, or they don’t know enough about it to want to talk about it, or they avoid it because they dislike the concept entirely. But the fact remains that as a society, “if I don’t see it, it doesn’t exist”, and so people with disabilities get swept under the rug or placed on pedestal to be admired, but never understood. Society doesn’t have an understanding of the lineage of disability or the breadth of experience that disability provides across the world. But still, we move forward toward a change and an attempt to see how to better move forward. When discussing ancestry, Stacey Milburn says, “…the ancestors would be the first to say that a lot of our contemporary politics are practical ones in nature- wanting loved ones to live life well, to have needs met, to experience joy, to love, to do what needs to be done, to feel freedom” (“Disability Visibility”, Milbern, 270). Milburn has an understanding that our ancestors and our pasts work together in tangent with the present to make a better future, but we have to look at them and recognize them first. I will continue to center the experiences of people with disabilities in my studies as a means of recognizing their lives and learning from them that I might share the experiences that they have to give with others, to increase the visibility of the disabled community.

Once we have seen the past and the present, we can get a better sense of community and redefinition. Community has been at the center of so much of what I have already studied. It is a deep longing for connection with others, to find a common thread and find joy in the relationship with people who are similar. I think that the studies of community in general are fascinating, but it goes beyond my understanding in the disability context. People with disabilities have been systemically denied community in the past, only given it in early learning or medical contexts. This leads to an increased sense of loneliness and hopelessness that could be easily avoided if society acknowledged the disabled community. This creates a sort of tension because if we focus on the academic community of disability, we are losing out on the experience of so many people who are not in academia. Similarly, if we stick to the common medical community, we are continuing to limit people to their diagnoses instead of acknowledging their scope of identities. This tension is addressed in stories like that of s.e. smith, who talks about the beauty of disabled spaces. They say, “It is very rare, as a disabled person, that I have an intense sense of belonging, of being not just tolerated or included in a space but actively owning it” (“Disability Visibility”, smith, 272). It is this sort of narrative that needs better understanding. Why has society kept community away from people with disabilities and how can we go beyond that?

Finally, understanding disability studies means understanding the need for redefinition. “The elements of interest here are the linguistic conventions that structure the meanings assigned to disability and the patterns of response to disability that emanate from, or are attendant upon, those meanings” says Simi Linton in her book “Reassigning Meaning” (Linton, 8). This concept is central to disability studies because our current definitions of words that are integral to the study are closed off and dated. Keeping disabled terminology centered in its medical origins is a limitation on the socio-political understanding of disability as we know it today. Once we redefine and reclaim terminology for the benefit of those with disabilities, instead of the limitations, it will be difficult to grasp at the core of disability studies.

Moving On: Coping With the Unknown

Thinking about the future of my personal disability studies journey, I think I have a good understanding of the theory and language surrounding the studies. However, I think that I am missing a practical element. While it is useful to be able to identify tropes and dated patterns of thought, I want to know how to apply and share my understandings outside of the academic context. How can I serve the disabled community, as both an ally and a member? Where do my privileges and limitations of experience fit in with disability studies? And broader questions like how do we help society to move beyond the inspiration porn concept of disability? 

Similarly, I would like to dig deeper into the study of mental illness as disability. We have many definitions of disability at this point, some broad and some narrow, but where does mental illness fit in? For specificity, does the mental health reclamation movement going on right now help the disability movement? Or is it a completely different conversation entirely? 

And as the broadest question of all, what is the end goal of disability studies? Is it to understand and learn from the past, like my definition of the study? Or is it simply to create an environment where people can be seen? 

Works Cited:

“Disability Visibility: First-Person Stories From the Twenty-First Century” (2020). Ed. Wong, Alice. Chapters by: smith, s.e.., Wong, Alice., Milbern, Stacey. “The Beauty of Spaces Created for and by Disabled People”. “Introduction”. “On the Ancestral Plane”. Vintage Books.

Linton, Simi. (1998). Claiming Disability: Knowledge and Identity. “Reassigning Meaning” pp. 8-17. New York University Press.

Furthering Conversations: A Review of “Disability Visibility”

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“Disbability Visibility” is a compilation of essays and short-stories from the 21st Century written by people with disabilities. Compiled by editor Alice Wong, the essays and short stories feature narrative glimpses of the lives of each author, from childhoods to relationships, from careers to activism, each story has follows the thread of disability into the intersections of everyday life. “Disability Visibility” is an anthology written both for the people who have never felt seen, and for people who want to expand their horizons and understand the complexity of our human nature. It is a chance for the authors to amplify their voices, their impassioned words giving insight into our perceptions and the reality of just how every experience is unique. It is a chance for the reader to grow in empathy and understanding towards your neighbor, and a must read for those who want to explore disability and intersectionality from a lived-experience perspective.

Authors like Shoshana Kessok, who walk the reader through the complexities of the medical system and the misguidance of bipolar disorder, help readers to get a glimpse of the fallacies of healthcare. But Kessok doesn’t leave the reader with the complications of getting your medications adjusted and the never ending appointments. Rather, they acknowledge that once you receive the help you need, your life can stabilize, and reaching out for help is always better than suffering alone. They talk about the interweaving of mental illness with creativity and how so many people feel that real artists have to suffer (mentally, physically, emotionally etc.). Kessok says, “I read books about people theorizing about the connection between mental illness and creativity and I shake my head. I don’t need to know the connection, because if there is one, it doesn’t matter to me. I take my medicine and work my craft at the same time because I don’t need to suffer as an artist” (Kessok, 187). Stories like these battle against society’s preconceived notions and reveal the truth about mental illness, while also serving as cautionary tales of putting too much truth into stereotypes.

Each story is unique, as unique as the author who crafted them, and stories about feeling different are not uncommon. June Eric-Udorie speaks about how having nystagmus made her feel broken, always praying for healing that would never come. In “When You Are Waiting to Be Healed”, she acknowledges the desire to be without disability and the sometimes confusing choice one can make when coming to terms with the identity of “disabled”. But she also acknowledges the joy of understanding yourself. “I come to church happy in the body I exist in; I come to church knowing that I am not a mistake waiting to be fixed,” June says (Eric-Udorie, 58). June gives the reader an understanding of growth and healing beyond definition, providing concepts that may fight with the reader’s previous conceived notions of healing.

This anthology is a series of love letters to the understanding of yourself, a celebration of difference, and a reconciliation between the past and the present. It proves that there is no predetermined way of living, that there is a freedom in expression and value in being in relationship with others who share a thread of understanding. “Disability Visibility” works around the reader’s biases, scraping away the force-fed egregious narratives fed to us by society and replacing it with bubbles of the lived experience of people with disabilities through all aspects of life. Ariel Henley, whose essay titled, “There’s a Mathematical Equation That Proves I’m Ugly”, which redefines our understanding of beauty, sums up the artistry found in each essay with a beautiful quote about her experience. “But art isn’t necessarily about beauty. Art is supposed to make you feel something, and I began to realize my appearance was my art. My body, my face, my scars told a story- *my* story” (Henley, 46).

A compendium of innovation, beauty, and wholeness, “Disability Visibility” is a quick read, offering readers a chance to see themselves and to see the lived experiences of people with disabilities. This book shows readers how empathy is the answer, and how we get there is by viewing each and every person, just as they are, seeing the value in all of our varied experiences. 5/5