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Exploring Different Bodyminds in Different Contexts

Limbo5 Comments

Navigating Disability Studies So Far: 

The field of disability studies is one that embraces intersectionality. Given the vast reach the field has and its roots in theory-based work, I cannot promise a precise definition, but I believe that it does not require one. One small example being the tie between disability studies and queer studies. Author Tim Dean summarizes it best in the claim that “What the field of queer studies shares most fundamentally with disability studies is a critique of the effects of normalization on embodiment, desire, and access” (Dean 144). It seems to hold core concepts and values that are apparent to anyone, that is what I would like to focus on. Disability studies is first and foremost representative of all communities, of all identities. This idea brings us to what is known as intersectionality. Since disability studies typically recognize the disability community as a rich culture itself, it is sure to include and explore identities within whether it be race, sexuality, gender and more. That is to say that the discipline highlights different bodyminds from different backgrounds. Secondly, I find representation being another key component tied into intersectionality. What I enjoy most about the study in my early introduction to it is the inclusion of mental health as well. While some may want to argue that a mental health survivor is/isn’t disabled, the discipline and those in it are not concerned with that. Terms and definitions can be extremely helpful when they are not being used to identify others in the upkeep of normalization and seclusion. The discipline represents a space for empowerment and encouragement through the critiques described by Dean. This unique study lends itself well to challenging the status quo and engaging audiences regardless of their knowledge on the subject.  

What Is Still to be Explored: 

There are still numerous unanswered questions I have about this subject, which is expected considering my novice status. I think where my interests lie is learning in more detail how ableism functions, how it’s upheld both implicitly and explicitly. While it has been mentioned and described, I think it just left me wanting to learn more. In addition to that, I want to know what solutions are being tried out or exist in response to ableism and the harm it creates. I think a history type lesson might help here. I would love to be taught about the past, present, and future of disability studies given I still don’t exactly understand how it came about. For anyone else learning about it, I think that approach answers why it is important that disability studies exists in the first place.  

Disability in Relationships 

Relationships in this context includes romantic, sexual, friendships, and family. Reading the novel Disability Visibility gave some insight on relationships in the disability community but it’s worth acknowledging that the community can appear family-like as well. S.e. Smith in their chapter titled “The Beauty of Spaces Created for and by Disabled People” reminds us that “Members of many marginalized groups have this shared experiential touchstone, this sense of unexpected and vivid belonging and an ardent desire to be able to pass this experience along.” (Smith 272). Community and all the smaller social circles that make up a community or culture can be an entire topic itself. However, through every piece I got to read I couldn’t help but feel that there is important relationships established or made here to begin with. Smith is right, being a part of the LGBTQ+ community this feeling is an important one. What one example like this tells me is there are quite literal friendships formed in communities as well as more casual ones built on unspoken, mutual understanding. I don’t believe it is an understanding of “We have the same experiences physically” but more so a powerful moment where someone is seeing another’s humanity and granting them emotional safety possibly for the first time.  

 Family can have different associations for everyone. For example, the idea of chosen family over biological is not foreign to me and one that saved me mentally in the long run. What I liked about my learning journey for disability studies so far, is the possibility of this ringing true for some disabled community members as well. Family experiences are going to range for anyone but two stories in particular stuck with me when it came to family. In “When You Are Waiting to Be Healed” June Eric-Udorie discusses how her disability was viewed by her family as they came from a religious background. June says “At home, conversations about my nystagmus were sparse, except when discussed as a thing God would “deliver me” from.” (Udorie 55). What I gathered from this piece was that June might have felt further pressure from family to conform to a new body that was not possible. While I want to make clear these are others’ experiences and not my own, I recognize that from the story there comes greater pain when normalization is encouraged by loved ones. There’s an interesting push and pull. I believe the family did love their daughter but did not show it in the correct way. June already recalls accounts of being confused by messages of religion, I can’t imagine how hard it was when your support system enables part of that even accidentally. From how she chose to end her story, I think one of the strongest relationships she had was with God and realizing she did not need any saving or “delivering” from anything. In contrast, in the short narrative “Imposter Syndrome and Parenting with a Disability” by Jessica Slice the topic relies on how strong her relationship is with her son and understanding motherhood through a lens that is never discussed. When closing on what makes her a good mom and create such a healthy bond with her son, Slice says “I like to imagine that soon he will find comfort in the fact that I’m so often around, steady and patient, ready to listen.” (Slice 132). My favorite part of Slice’s story is the emphasis on her emotional bonding skills with her son. I think many people in the world can be there physically for their kid, I get that closeness is important. Where many parents fall short is losing the emotional tie because they do not actively/reflectively listen. When that kid grows up and becomes an adult it might be even harder to discuss real issues or sensitive thoughts.  

Rhetoric Fueling Disability Studies 

This topic is a challenging one and one I still would like to do more work with. Most people have a certain image or short description ready in their head when they see the word rhetoric. Initially, I did too, and I assumed I was mostly right. While rhetoric may include the traditional persuasive aspects we come to know in essays and political debates, there is so much more to it. A better question then is how does it work within and for disability studies?   

Rhetoric reaches across verbal and written communication as everything can be rhetorical. A way I tend to view it is rhetoric as energies. Everything has rhetorical energy. Rhetorical energy can come from a person or an object in which people interact with. Not only objects, but our environments in general. I believe there is usually a mutual transfer of this energy from rhetor to audience, rhetor to environment or rhetor to object too. Acknowledging that rhetoric exists inside and outside the world of verbal and written forms opens a lot of doors for those who are disabled. When majority of society leans toward one or two forms of communication in specific outlines for each, people are bound to fail. The normalization mentioned previously is apparent here as it creates a binary of passing and failing. In their book Fading Scars: My Queer Disability History O’Toole makes a point in line with this concept of strict rhetoric stating “Not only are disabled students presumed incompetent, but also students who speak English as a second language” (O’Toole 22). I think the way that schools typically have this issue simultaneously displays how people in general ignore the power of rhetoric in our environments. The same way a politician can give a speech on why disability rights and inclusion matter while sharing rhetorical energy with the audience is the same way a set of stairs can with its own “audience.” If a university is all uphill with only stairs and gates that sends a message. It is not intended for people with a disability because the people who designed it gave them no thought. Whether it is implicit or explicit in its expression, there will always be a rhetorical energy found in the things we create or interact with. O’Toole highlights this when they discuss the exclusion of the disabled community in media and history. They write “We are ignored, overlooked, mislabeled, discounted, omitted, and sometimes intentionally not discussed.” (O’Toole 39). The act of saying nothing can hold the most rhetorical power since it says a lot. Not saying anything can cause a world of violence on a small scale like individual cases to a larger scale like dangerous policies being enacted (or taken away for that matter).  

Bodyminds in a Medical-Focused World 

One of my favorite topics in disability studies so far has to be the inclusion of realizing medical-based ideologies often conflict with the people in which the medical community treats. I’ve personally been more invested in psychological healing like therapy more so than learning about biology treatments and the medical field. It shouldn’t come as a surprise that doctors sometimes fail to be there emotionally for a patient or use proper language of inclusion. Of course, they are trained on ethical and moral issues, but that does not mean they make no mistakes. A medical model of disability is aimed at resolution of the body to reach, once again, a standard of normalization. I bring back s.e. Smith into the conversation as they clearly explain the context we choose to frame those with a disability and the spaces we give them to exist. Smith writes “For disabled people, those spaces are often hospitals, group therapy sessions, and other clinical settings.” (Smith 272). How the majority frames any minority actively has long term effects on how they live and usually the quality of life they live. Specific language used in disability communities is not acknowledged by the medical community whatsoever. We rarely see or talk about disability as a cultural experience and the introduction to disability studies is the first time I have viewed it as such. O’Toole claims “That information is rarely known by nondisabled medical professionals, who are almost always disconnected from the broader disability communities.” (O’Toole 17). The burden of change rests not solely on the medical community but on all of us. When someone is exposed to disability circles, real social settings for their community their quality of life is changed because for once they do not have to justify their existence. I think it is up to everyone outside of disability circles and communities to recognize that different bodyminds are not left for doctors to discuss. The conversation does not start and end in medical settings.  

Work Cited: 

Adams, R., Serlin, D., & Serlin, D. (2015). Keywords for Disability Studies (Keywords). Chapter author: Tim Dean. “Queer”. New York: NYU Press. 

Disability Visibility: First-Person Stories From The Twenty-First Century, edited by Alice Wong, Vintage, June30th, 2020.  

O’Toole, Corbett Joan.  “Celebrating Crip Bodyminds”, Fading Scars: My Queer Disability History, 1st ed., Autonomous Press, June 9th, 2015. 

Exploring Meaning In Systems of Power: A Composite Essay on Disability Studies

Turnip Friend11 Comments

A) Defining Meaning in Terms of Disability Studies

I don’t think the phrase Disability Studies has just one meaning. Similarly, I’m not sure if it’s anything more than a noun describing an academic discipline that examines the nature and effects of disability through texts written by, often for, and about people with disabilities. When trying to define nouns, usually their meaning comes from listing the sum of their parts or their function. The basic definition of a wheelchair is that it is a chair mounted on wheels for use as a means of transportation. But asking the question, “what does the word ‘wheelchair’ mean?” is different than asking what a wheelchair is. This is because the word ‘meaning’ implies that the noun has individual significance to those interacting with it, like a symbol, whereas a definition exists on a societal, discourse-based plane. When I ask myself what Disability Studies means, I first choose to recognize that on a societal plane, my meaning means very little, and there is a high possibility that its significance to me only scratches the surface of what it really is. Likewise, the true definition can only scratch the surface of its significance to me. But then again, maybe I just have trouble comprehending abstract nouns without associating them with tangible objects. This happens to be why Dictionary.com is a tab I have always opened on my laptop. Therefore, to me Disability Studies is sitting in a classroom on wheel-y chairs at wheel-y tables with the expectation that if a wheelchair user were to enter through the door, they would be able to maneuver through the class easily, both in the metaphorical sense, and the physical sense. I think one of the main points of Disability Studies is to learn about and understand the needs of those with disabilities, and to create accommodations. I’d even go as far as saying the final goal of Disability Studies is to eliminate the need for “accommodations” because that term in of itself implies that those creating the accommodation are performing a kindness or a favor for those who require them. Therefore, perhaps engaging with Disability Studies is the act of recognizing that disability itself is normal, and thus “accommodations” shouldn’t be seen as anything more than the expected requirements followed by all institutions and spaces for the functional participation of every person. 

B) Questions: Can we Close the Gap between Theory and Praxis?

The questions I want to ask as we move forward might not have answers, or might have far too many. With that in mind, based on the idea that disability only exists within the context of its environment, I want to know, if we are able to change our environments by making them accessible to all, would we lose the term “disability” and the good that a label can bring to those seeking community? Is this question even relevant considering the current climate of minimal accessibility in most institutions and spaces? This again brings me to the difference between abstract nouns and physical nouns. Is the ultimate goal to support people with disabilities to the point of eliminating the need for the descriptor itself, because it implies a deviation from the norm? How can we actively change our culture’s societal expectations for how a “normal” person looks, acts, and lives? Should we be trying to destroy the concept of “normality” itself, by perhaps simply replacing it with the word “common?” Is it right to label people by what they cannot do, how they cannot exist, or function? Is a way of reversing this convention to start thinking about disability being the norm through the use of the word “nondisabled” rather than say “able-bodied,” because the word “nondisabled” implies that a person who lacks disability is the one who is deviating from the norm? I’m not sure if any of these questions even deserve discussion because of their theoretical nature compared to questions based in praxis that might lead to more material change in the lives of people with disabilities. A few final questions are: Should people who have no disabilities even have a right to voice their opinions on Disability Theory? Should their opinions just be seen as less valuable due their inescapable presence in discussion about changing spaces to increase accessibility? 

C) 

  1. Meaning and Authority:

Based on information I’ve drawn from the readings Reassigning Meaning by Simi Linton and Celebrating Crip Bodyminds by Corbette Joan O’Toole, my first topic of discussion is focused on terminology within Disability Studies, and the history of the groups of people have had the social and legal authority to create and define those terms. Linton writes, “A glance through a few dictionaries will reveal definitions of disability that include incapacity, a disadvantage, a deficiency, especially a physical or mental impairment that restricts normal achievement; something that hinders or incapacitates, something that incapacitates or disqualifies” (Linton, 10-11). This quote is interesting because I think it’s important to ask where dictionary writers are getting their definitions that are put into publication and become standard. Clearly the words like handicapped, crippled, and special were not created by the communities they were meant to represent, and instead were designated by nondisabled people who viewed disabled people as lesser beings. From what I learned from Linton is that much of the arbitrary designation of terms were upheld by those in the medical field who were primarily white, upper-class men who made strict distinction between how they viewed a “normal” bodymind is supposed to exist, and those considered abnormal despite the commonness of disabilities throughout all human populations. O’Toole writes, “Once we stop viewing ourselves from the medical perspective of sickness, diagnosis, and aberration, and find circles of disabled people, we can often feel pride about who we are, the skills we’ve learned and the interdependent circles we’ve created (O’Toole, 14). I really appreciate this quote from their piece because only in the last handful of decades since the Disability Rights Movement have disabled people been able to lead the discussion on disability and how they deserve to be treated within medical institutions, in academia, in media, and every space that nondisabled people occupy and have a history of excluding disabled people from. Linton writes, “The Disability Community has attempted to wrest control of the language from the previous owners, and reassign meaning to the terminology used to describe disability and disabled people” (Linton, 8-9). From what I can tell, there is still a long way to go for the disabled community in terms of wresting authority on the language surrounding disability as well as making legal strides to uplift the community. However, the field of disability studies continues to grow and I do think there will be great progress made in the next few decades.  

  1. Celebrating Disability: 

As stated by S.E. Smith in “The beauty of Spaces Created for and by Disabled People” from Disability Visibility, “there is something weighty and sacred here…. where disability is celebrated and embraced” (Smith, 271-273). This second topic I have found particularly significant because it seems that a large aspect of disability studies is centered on not only on how the disabled community is trying to garner a baseline human respect from their nondisabled peers, but also a respect that their bodies and minds are not undesirable to inhabit and exist within. O’Toole writes about how oftentimes in the United States, people will test for fetal “abnormalities” during pregnancy so parents can decide whether or not they want to abort a potentially disabled child. For a long time I was only ever aware of the ableist rhetoric behind this practice which centers around the idea that parents wouldn’t want their child to have to “suffer” from their disability, and the quieter notion that the parents wouldn’t want to “suffer” from being financially tied to a child that may require medical care which is far more expensive in the United States than any other first world nation. However, through this class, it has become clear that one of the only reasons why these ableist societal beliefs exist is because of a lack of accessible infrastructure in our institutions and a generally gargantuan disrespect for any human lives that deviate from the “norm,” especially multiple overlapping marginalized identities. O’Toole writes that, “For many of us, the reality of being disabled, the way our bodyminds function is cause for celebration” (O’Toole, 14). Because of the disenfranchisement of disabled people, the ability to create loving, supportive communities has allowed for a much greater quality of life for disabled people, which wouldn’t be possible without their strength and determination. Disability is cause for celebration because experiencing life itself is cause for celebration, in any and all forms it takes. 

  1. Compulsory Able-Bodiedness

The concept of compulsory able-bodiedness is a subsequent issue that stems from the two prior ideas. In the chapter “Queer” in Keywords for Disabilities, the author Tim Dean references another authors work, saying, “Rosemarie Garland-Thomson deployed the concept of the “normate” in her influential book Extraordinary Bodies to designate ‘the social figure through which people can represent themselves as definitive human beings’ (1997, 8)” (Dean, 144). This idea is important because when people are forced to, or expected to compare themselves to an unrealistic ideological standard, their framework of the world becomes imbedded with the sense that they are the incorrect form of a human being, when there really isn’t a true and perfect form other than what people have collectively decided it is. This ties in with how sexuality is talked about in terms of Disability Studies as well. Dean succinctly explains that “Comulsory hetero-sexuality depends of compulsory able-bodiedness, since heteronormativity assumes first and foremost that sexual subjects must be able-bodied, healthy, and therefore ‘normal’” (Dean, 143,144). The way that I interpreted this concept relates to the previous sections where O’Toole expresses their issues with aborting disabled fetuses. Because of the relationship between heteronormativity and able-bodidness, there is the problematic societal expectation that people with disabilities should engage with their sexualitites because of our culture’s history of eugenics, and the violent discouragement from reproduction that people with disabilities have faced in the past from bigoted systems of power. However, we can choose to see truth in the idea that “Queer approaches to thinking about disability and sexuality argue that neither the human body nor its capacities are biologically determined; rather, both disability and sexuality are constituted via sociocultural processes of normalization” (Dean, 144). This quote is particularly meaningful because it separates both disability and sexuality from the body as concepts, and places them in the realm of the environment. As I’ve stated previously, our conceptions of what disabilities are, only exist because of the expectation that people are supposed to function differently. Similarly, our culture’s expectation of heterosexuality as norm is what has led to the quantification of other sexualities being lumped together under umbrella terms like “queer.”

Works Cited:

Dean, Tim. “Queer” Keywords for Disabilities. NYU Press, 2015. pp 143-144

Wong, Alice, et.al., Disability Visibility. Vintage Books, June 2020.

Linton, Simi. Reassigning Meaning. NYU Press, 1998. Pp 8-11

O’Toole, Corbette Joan. “Celebrating Crip Bodyminds, ”Fading Scars: My Queer Disability History, 1st ed., Autonomous Press, June 9th, 2015. pp 14.

Back to the root: Identity

Tuesday5 Comments

Section 1: Impersonal — Larger Context

Disability is becoming a broader term by the minute. The line between the disabled bodymind and the abled bodymind is blurrier every day. Disability studies seems to be working to create the disability lens, the outlook I hold responsible for this confusion. The Disability lens is a way to look at, to break down the everyday world with respect to how it interacts with disability. It is my belief that the construction of “lens” is the purpose of disability studies. One cannot add to the “lens”, expand the “lens” without some introspection and investigation into the disabled experience. Many would also stress the importance of knowing how to apply this “lens”. I think we apply lenses instinctually as we learn about the new lens. Discussion about the system of society and the variable Disability give insight on how the lens works. No one person will uniformly use the disability lens, but there are overlapping methods. The most blatant application is using language, a mode of communication unique to communities and cultures.  Most traditional or formal language surrounding disability have a medical origin which often perpetuates an ableist culture.  The medical disability lexicon had and has very little input from the people living with disability, causing that lexicon to be unable to accurately express disabled experience well. Many disabled communities have turned to create new terminology which better facilitates use of the disability lens.  As put by Simi Linton, “This new language conveys different meanings, and, significantly, the shifts serve as metacommunications about the social, political, intellectual, and ideological transformations that have taken place” (9). Ultimately Disability Studies is about deconstructing the default experience in society in favor of spotlighting a periphery experience.  This benefits all participants in society as the process undertaken through disability studies leads to a critique of “normal” which very few people benefit from.

Section 2: Interpersonal — Narrowing the Focus

Moving forward, I want to spend a bit more time focusing on coping methods. I need to clarify this a bit. When I say coping methods, I am particularly referring to the search for community or the avoidance of community. Most people seem to search for community as a way to alleviate stress or discomfort, a way to feel safe. But what about community inspires this sense of safety? Are there instances in which community is actually harmful? Does it deviate in any meaningful way from society at large or is everyone just similar in experience? Is that a meaningful deviation? I would find some exploration into interpersonal communications and identity enlightening as a person who has always struggled to feel support from or attachment to people. It boggles my mind how people can just seemingly join a community and feel strength.

I also hope that we can as a group, the other authors on this blog and I, can reach a tentative definition of disability. With a less nebulous sense of disability, we could probably refine how apply the disability lens. Honestly, maybe further constructing and exploring the disability will help us come up with an agreed upon definition of disability. I think that it would also be able to add more cultural views to the discourse. We are heavily focusing on the US and Canada limiting our view of larger ableist trends and ways to fight ableist narratives. Gaining a solid idea of what disability truly is will help us break down tropes in representation.

I apologize to my fellow authors if this is aggressive. However, I think we speak with a considerable amount of trust that our points are being understood. This is highly unlikely. There have been several instances in which all of us are missing the others’ point. To remedy this, I would like to bring a bit more focus to the larger context behind issues we discuss. I think this will help us establish a base line. I have noticed that the times when points do land are instances when an author gives context to their reasoning and conclusions. I do not think we are examining why these behavior patterns and viewpoints exist nearly enough. How can we understand what is happening without examining all sides and angles? The short answer is we cannot. I am aware I am promoting the inclusion of systems thinking in future discussions, but I believe we will be able to gain more meaningful outcomes from our discussions. I also acknowledge that not all of us may have bac ground knowledge in systems thinking.

Section 3: Personal — My Highlights.

Desirability:     

The world can be classified into two categories what is desired and what is not. This is the framework for concepts such as attraction, beauty, and acceptance. If something is deemed desirable in some aspect it is more easily accepted, considered beautiful and sought after. This is the crux of ableism. An able bodymind is desired because it is convenient, requiring little effort to navigate culture, social situations, and the physical world. This is only the case because an able bodymind is considered the default and something the majority possess. I believe we downplay the amount of people who identify having a disability. According to the CDC, approximately one in for adults in the US report to having at least one disability. Another consideration is disability is higher in minority populations due to socioeconomic factors which already classify those minorities as undesirable in some way. This leads to  It is important to note that this just the portion of the population that will report having a disability. Many times, if a disability is maskable or not blatantly detrimental, the person with this condition will not identify the condition as a disability. This does not mean that it is not impacting their life. But why would they hide or ignore something that is impacting them in such a horrible way? The answer is complex dealing with older social structure such as “Aesthetic values were often used to define in those “lives worth not living”…”(29, Keywords), stigmas surrounding mental health and identity confusion. Aesthetics are based upon desirability and are not limited to the physical. There is such a concept as an aesthetic mindset or school of thought.

Imposter Syndrome:

Have you met the standard to be considered part of this community? Will you be able to? Imposter is an almost fatal disease. It is a fight every day to overcome and often it stops people from reaching out for help. It has mental and physical ramifications. Yet it is rarely acknowledged. We only hear stories where the imposter syndrome is overcome. I have burgeoning theory that imposter syndrome is the outcome when a counter community begins to closely mirror the original norm. The outcome of a standard that excludes individuals it should in theory encompass. A person can feel like they are not disabled enough, like they do not deserve to be leading their research on subatomic particles because they do not look the part of a Physicist, or even that they are not a true parent. This is the case of Jessica Slice, a mother with Ehlers-Danlos Syndrome which impairs her movement from time to time. “When people talk about Parenting … I can chime in, but a part of me feels like an imposter” (129) she states, and later continues to explain that the cause of this feeling is her inability to move as well as her son. It is a set of capacities she had been told a mother should have that was preventing her from fully identifying as a parent. This example illustrates the main issue with imposter syndrome, if you struggle to feel the sense of validation from an identity is it really your identity or an identity forced upon you?

Intersecting Identity:

Firstly, lets breakdown a working definition of identity. Taking the definition given by Julia Rodas in Keywords for Disability Studies, “Identity is the idea of the self which is understood within and against social context…” (103). In almost all chapters form Disability Visibility multiple identities have been brought up next to disability. Nearly every author focuses on an identity outside of their disability. This is a discussion that is not well developed in the sense it has not been centrally focused upon. However, intersectionality has made a cameo in every discussion we, the authors, have engaged with so far. This leads me to believe it is a necessity to consider. Every person consists of multiple versions of themselves, highlighting certain aspects over others, that they use interact with the world around them. Is it too much of an assumption to say that the true person is an amalgamation of these different selves, different identities? As O’Toole observes, “Each of [O’Toole’s public identity related] circles intersect in [their] life but rarely do these circles interact with each other. Each of these circles contain people who are parts of many other circles such as Black people, working people, etc” (38), identities tend to be kept separate. I believe that this may be due to conflicting interests and consolidating a war to individual battles.  It is hard to focus on fighting against racial prejudice, homophobia, and/or ableism all at once, while making progress. However, there is a time where we need to focus on how a person’s identities combine and shape that person’s experiences.

Works used:

Disability Visibility:

Disability Visibility: First-Person Stories From The Twenty-First Century, edited by Alice Wong, Vintage, June30th, 2020.

Keywords:

Adams, Rachel, David Serlin, and David H Serlin. Keywords for Disability Studies. Keywords. New York: NYU Press, 2015.

O’Toole, Corbett Joan.  “Celebrating Crip Bodyminds”, Fading Scars: My Queer Disability History, 1st ed., Autonomous Press, June 9th, 2015, pp.13-53

Interplay: Or My Evolving Understandings of Dependency, Access, and Accommodation in the Context of ENG 401 and Disability Studies.

Clover3 Comments

A) My current understanding of disability studies: The completion of this Composite Essay has brought me to consider what I know at this time about disability studies, based on my three weeks as a student in ENG 401. This far into our course, I understand disability studies to be the academic interpretation of disability, especially in play with society, beginning with the principle that disability exists as a social construct and not a physical condition. A disability may stem from various physical or mental impairments, but those do not inherently make someone disabled. So, disability studies would strive as a cause to re-educate the public through disability awareness, and establish more equitable systems in society for those who are disabled.  Personally, I subscribe to the social model of disability, which proposes that disability arises from social barriers as opposed to physical impairments. I resonated with the model after reading the chapter “Reassigning Meaning” by Simi Linton from Claiming Disability, one of our Week One assigned texts. Something I find particularly relevant to my understanding of disability studies from this chapter is the way Linton regards disability terminologies, which she claims “have been used to arrange people in ways that are socially and economically convenient to the society” (Linton 9-10), and this precedes even their definitions. In my experience, becoming aware that American society is not inherently designed to accommodate disability, at first, carries a charge of blame to it, but it’s hard to pinpoint exactly where or to whom. While perhaps our lawmakers have work yet to do, I think Linton’s observations illustrate an important point; that disabled people are a minority, and that societies unfortunately trend towards expediency to accommodate the largest number of people with the least resources. So, the minority status of disability is central. I think this helps to get at the definition of disability studies, too, because much of the focus of disability studies is in identifying gaps in accessibility, which helps institutions to avoid oppressing the disabled and lowering their quality of life. On page 12, Linton writes that “a premise of most of the literature in disability studies is that disability is best understood as a marker of identity”, and I like to extend this to disability studies as well, which approaches disability as a highly integrated facet of the self as part of the whole bodymind. So, disability studies, in short, is a sociocultural understanding of disability as a construct, with an emphasis on equity and inclusion and in resistance to the classic, medicalized understanding of disability. Or that’s what I know of the topic so far in this course.

B) What I would like to see more of as the quarter continues: Our class had a discussion last week on what topics we would like to pivot towards as the quarter drags on, and I maintain interest in disability and masking, workplace discrimination, and crip theory. As well, I would appreciate further instruction in rhetoric, because I felt my writing skills get stronger almost immediately after reading the Grant-Davie text. Having the language to articulate someone else’s argument in abstraction from the text has been a massive insight for me. I know that the rhetoric is secondary to the disability studies focus of the course, but it has been what’s stuck with me the most so far. Of course, the three topics below are also things I would like to revisit further into the quarter.

C) Three concepts with significance to me thus far: For the third part of this composite piece, I’ve selected three topics that have been on my mind, and in my journal, recurrently this quarter. I’m going to discuss dependency, access, and accommodation, because I think these topics are similar in a lot of ways, but distinct, and they identify some of the social ‘rubs’ of disability. The topics are highly interconnected in the adult sphere of disabled life: for example, graditations of dependence requiring improved accessibility and accommodation to manage, improving access helping to manage dependency, and accommodations which improve access in society. Social opinion is heavily enforced by these topics, which are often subject to public scrutiny, as there’s usually a democratic process to expanding access/accommodation using public funds. I am interested in the way each topic feeds into the next, and with my interest in theory, have been priority topics for me thus far in the course.

Concept one: Dependency

I’ll start with dependency, which I view as one part of disability that society is not capable of ignoring, and has an obligation not to dismiss. Unfortunately, the responsibilities of providing economic support, additional needed care or technology to those who would require them has poisoned society’s understanding of dependence as anything other than a social problem. Eva Feder Kettay, who authored the chapter “Dependency” from Keywords for Disability Studies, wrote that many scholars of disability acknowledge, contrary to this, that “what undermines the ability of disabled people to flourish is the view that being self-sufficient, self-reliant, and self determining is the norm, and the only desirable state of persons in a liberal society” (Kettay 54). Dependency isn’t a lack of independence; rather a state of recurrent need for assistance in some way. Viewing those who are dependent as a sunk cost invites the incorrect assertions that teaching independence “ultimately saves public expenditures because the provisions sought are less costly” (Kettay 57). Dependency is a relationship which can be managed, and managing dependency allows those needing care to “select and optimize the opportunities that such acknowledgment makes possible”, growing synergistically with those involved in their care to where both parties feel respected and understood (Kettay 58). I wanted to address dependency first because dependency seems to be the line at which society takes issue with disability. As well, society’s understandings of both access and accommodation are both intimately informed by understandings of dependency, and what dependency looks like, and what it allegedly costs to the public.

Concept two: Access

Second to dependency, I believe the concept of access is a helpful foil, and is a topic that has dominated our class discussions this quarter, so is worthy of notice. Chapter three of Keywords for Disability Studies, by Bess Williamson, is all about access. Williamson defines it access in a few ways: as “ the ability to enter into, move about within, and operate the facilities of a site, and is associated with architectural features and technologies, including wheelchair ramps, widened toilet stalls, lever-shaped door-handles, Braille lettering, and closed-caption video”, but also acknowledges the figurative aspect of access, the “set of meanings linked to a more inclusive society with greater opportunities for social and political participation” (Williamson 14). The type of access I had considered over the quarter so far would be access in society; to jobs, resources, experiences, states; so, the first kind Williamson mentions. It’s this kind of access that the disabled are not privy to in whatever regard which sets the field of ableist privilege in society. I agree with Williamson that besides representing a type of social liberty, access and accessibility convey “arguments about rights and opportunities” (Williamson 15). Access is in this way a positive skew on the elimination of opportunities, but must not mandate “overcoming the reality of barriers” (Williamson 17). Access is not achievability, but availability. It’s through examining access that accommodation can be taken, anyhow.

Concept three: Accommodation

As mentioned twice above, I view accommodation is the praxis of access. I would have said walking into this class that accommodation was a goal of disability advocates outright, but today I would say that it is part of a customization process that some disabled people elect for and pursue to achieve better social inclusion. I was surprised that Keywords for Disability Studies’ chapter on accomodation, by Elizabeth F. Emens, only really acknowledges accomodation in institutional terms. Although the term first “gained prominence as a keyword in disability politics and theory through legal discourse” (Emens 18), it has since gone on to describe the set of manipulable parameters an institution can customize to better suit the needs of an employee, student, customer, client, etc. therein. As something that exists between institution and individual, accommodation is an intensely litigated topic, and Emens believes that to some scholars it will “always be too limited a model”,  because it’s “grounded in antidiscrimination principles” from its origins in the courthouse (Emens 20). I think that accommodation is central to disability studies because it exists in the liminal space between exclusion and inclusion, so when accommodations are available there is an additional responsibility that they must be freely and readily given. Part of my own frustration with the institutions who helped to manage my disability when I was young were the inconsistencies in delivering accommodations. To our class, the topic of accommodation is treated almost as an option to rectify the exclusion of societies which are ableist by design, and has so been a third and final focus of mine this quarter.

Conclusions:

I chose to discuss dependency, access, and accommodation because of how connected they are to each other, and to public conceptions of disability in society, one concern of disability studies. As the quarter progresses, I do expect my understanding of these topics to change, and something I would be interested in is revising this essay at the end of the quarter and measuring my academic growth on these topics. I’m grateful for the chance to be in class every day, growing my understanding, and I hope my empathy, but I am by no means a definitive authority on any of these topics. 

Works cited:

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


Adams, R., Serlin, D., & Serlin, D. (2015). Keywords for Disability Studies (Keywords). Chapters by: Emens, Elizabeth F., Kettay, Eva F., Williamson, Bess. “Accomodation”. “Dependency”. “Access”. New York: NYU Press.

“Normal” is Bull Shit

unsureunderwaterobot3 Comments

What is Disability Studies? And what questions do I have?  

Disability studies is broad, specific, academic, anecdotal, and intersectional; it transcends time. It aims to answer, what is it like to be disabled now? How it was being disabled in the past? How can we improve the world for disabled people moving forward? It is a study of people, places, things, and ideas. Disability studies does not exist in a vacuum; it cannot be seen through a narrow lens, but rather views the world holistically, centering disabled stories and lives. This field is far reaching. Disability studies is a study of race, sexuality, orientation, class, disability, privilege, rhetoric, design, language, limits and beyond. It offers a wider perspective of thinking and progressively looks to embrace and empower intersectional thinking.  

Disability theory is not an algorithmic equation. It cannot be memorized and regurgitated. It is a way of thinking and it’s for everyone. It is story-telling, listening, and amplifying. The way I have thought about it, it’s like putting glasses on your brain. Disability studies sees the world differently than churches, medical labs, and politics; and it acts accordingly.  

An interesting dilemma I am struck by is that I am learning about disability studies in a very ableist place. Higher education perpetrates all the “ism”s, both tangibly and intangibly.  

Disability studies seems to pose more questions than answers.

How, then, can we continue to open the floor for disabled voices in the classroom? How can teaching styles, floorplans, even temperatures be deconstructed to create a space suitable for the masses – including but not limited to disabled folks? How can we question our motives to ensure we aren’t studying out of pity or saviorism? How can we have open-ears but continue to be critical? How can we ensure our actions are not bandaid solutions? How can we actionably move toward a better world for disabled folks that gets at the core of mistreatment? How can we approach disability studies with a wide-reaching theory, while recognizing that disability is not a monolith? 

These questions are posed not to accuse, but to query. I think in the spirit of disability studies, I am called to push forward the spaces I take up. 

Critical thinking, based on our positionality is a huge part of disability studies. It challenges our learned understanding of “normal”. These learned understandings often come from a place of ableism, hierarchy, and individualism, and they must be broken down and unlearned. Because “normal” is bull shit. Disability studies supplies language, action, and conceptual reframing for learners to deconstruct ideas of “normal”. If there is no “normal,” which several authors have claimed thus far, how can we recognize difference? Eliminating “normal” can be misconstrued and create monoliths of understanding, which I am still grappling with. O’Toole, author of Celebrating Crip Bodyminds writes on the complexities normal and how we can balance deconstruction with recognition: 

“Acknowledging that there is no ‘normal’ doesn’t mean that everyone 
experiences disability as a political and social identity. Acknowledging that there is no 
‘normal’ creates a society where difference can be recognized without being diffused or ignored. It does not take away the culture of disability, only adds an opportunity and awareness for us to be more integrated into society as a whole” (O’Toole pg. 12) 

O’Toole mentions integration, which sparks yet another question. Integration can, in cases, lump folks in a way that does not appropriately observe difference. How, then can we acknowledge/recognize without diffuse/ignore?  

The questions keep on coming.

Sex, Beauty, and Disability  

Sex, attraction, and physical beauty are heavy concepts that carry personal and structural weight. Sex and beauty are vulnerable for nondisabled folks who don’t experience marginalization, so bringing in disability is a whole new can of worms. Sex and beauty are often tied closely with white supremacy, consumerism, and unrealistic standards. The rhetoric of the world tells us that disability equals abnormality and abnormality equals ugly. These structures are inherently false, but rampant. Margaret Shildrick wrote on sex and disability in Keywords of Disability Studies. They write about why disabled folks are sexually fetishized or erased, “… we might conclude that it is because sexuality is always a site of deep-seated anxieties about normative forms of embodied being” (Shildrick pg. 165). Shildrick emphasizes that the mistreatment of disabled people comes from projected insecurities. I would argue that those insecurities come from a greater structural standard. Woven throughout Disability Visibility are stories of beauty and sex within the disability community. Stories of lives shared between disabled lovers are portrayed in Sins Invalid as well, a documentary of a performance team in San Francisco. These two learning tools use creative story-telling to enlighten viewers of the multifaceted experiences of disabled people regarding beauty and sex.
 

Rhetoric of space and Crip Space   

As explained in Dolmage’s Disability Studies and Rhetoric, there are myths created about disability that stem from inaccurate rhetoric; rhetoric in the literary sense, rhetoric of space, rhetoric of politics, and rhetoric of economy and culture. The world has given us a language, a physical space, and a general understanding that is built on ableism.

The concept of “crip space” was introduced in Disability Visibility in the chapter The Beauty of Spaces Made for and by Disabled People. Crip spaces are environments that are constructed in a way that not only includes disabled bodyminds, but is centered around them. The concept of crip space is very rhetorical by nature. Spaces produce an ability or inability to exist for disabled people. If an office is on the top floor of a building that only has stair access, a wheelchair user cannot physically exist in that space. If a classroom is taught at the speed of a neurotypical person, that classroom has lost its value for someone who is mentally disabled. No one used their worlds to explicitly tell disabled folks they don’t belong in those spaces, but the spatial rhetoric produced a space in which disabled people cannot exist. s.e. smith argues, “this is precisely why they are needed: as long as claiming our own ground is treated as an act of hostility, we need our ground. We need the sense of community for disabled people created in crip space” (s.e. smith pg. 274).

Healing 

After skimming through my journal, I am struck with the reoccurring topic of healing. This came up several times at the beginning of the quarter. Medical, charitable, social, and cultural scopes of disability have different ideas of what healing looks like. I think the idea of “healing” requires some sort of sickness (something that must be cured). In understanding disability studies, the sickness (what must be cured) is ableism. When You’re Waiting to be Healed is a story that portrays this concept well. It is about a girl growing up in a religious family with Nystagmus. Her family prayed for her eyes to be healed from the “cursed abnormality”. She writes, “I was praying a lot, asking God to heal me so that I could have some sort of normality” (Eric-Udorie pg. 55). She was desperate for her eyes to be healed because the world around her told her that she was the problem. I would argue that disability studies sees our hierarchal culture as the problem.  

Sexuality, Race, and Community

turtle4 Comments

To me, Disability Studies is a term used to describe the study of disability in terms of social, political, medical, economic, and educational structures. Disability Studies focuses on analyzing and education oneself on what it is to be a part of the disability community and the discrimination, segregation, and marginalization that they receive. Alice Wong writes, “Disability is sociopolitical, cultural, and biological.” (xxii) in the introduction of Disability Visibility. Disability is so much more than that though, as she later writes, “Disability is pain, struggle, brilliance, abundance, and joy.” (xxii). I feel like my definition of Disability Studies has come to a more full understanding over the last few weeks and I hope it will continue to do so.

As we move forward with this class, I hope to address many things. I feel as if I have more questions every time I leave the classroom. When I really think about it, the main things I am interested in are international. How do we compare in our societal and political treatment of the disabled community with other countries? How might we do better on Western Washington University’s campus for our peers who identify as disabled? I would also like to talk about lack of resources for children, like the kids in Gaza who are made disabled as a result of war and do not have access to what they need. I am from Palestine and every day I see and speak about people who have become disabled as a result of war and their fight to survive, now on a different level, as Israel continues to deny them the medical attention and supplies they need to survive. In terms of that, I also wonder about international law. I do know that there is an international law of war that protects the disabled community from targeted violence. Are there other laws like this? How well is this law maintained, especially considering we cannot always physically see or observe another person’s disability?

The first topic that really connected with me was sexuality in terms of Disability Studies. I had not really thought about the sex life and/or sexuality and what that entails for people from the disability community. In society’s eyes, they are undesirable and unwanted, they are not sexual beings. Humans are sexual beings, we crave love and physical affection from those we think highly of, members of the disabled community or human first and therefore have the same urges and experiences that others do, whether society is willing to admit that or not. I really connected with the documentary Sins Invalid because of the message it had. People of all colors, sexuality, creative method, and disability were on a stage taking back what is rightfully theres. They took back their sexuality and tore down the misconceptions that society gives us. The way everyone put their feelings, thoughts, and souls into their art made it feel so vulnerable and so incredibly touching. I want to continue to push past misconceptions created by society, to educate others, and push the boundaries down so that we can have more open discussions about sexuality in our communities, to normalize disability in terms of sexuality and embrace it instead of the ideas that society has put in our heads.

The second topic that I connected with was race. I have spent a lot of this class making connections to my experience as a marginalized person due to my race. I have been able to see similar ways that I, as an Arab, have been discriminated against that is very similar to the discrimination that the disability community faces. Later, we did a reading from Keywords for Disability Studies where I read the chapter on race. I learned about the problems of connecting race and disability and why making these comparisons can be very detrimental for the disability community and their goals. The book says, “The act of correlating race and disability is often fraught with violent and oppressive overtones.” (145). I’ve learned a lot about why I shouldn’t make this comparisons and how detrimental it can be, that these overtones will be assumed about the disability community if we keep making these connections and that can hinder their goal. In the end, I think this society requires deeper understanding of the terms ‘race’ and ‘disability’ in order to be able to compare and contrast without risk of misconceptions. Without creating these definitions, how can we move past these overreaching comparisons that create negative assumptions and make it difficult to work with race and disability in context of each other. Sometimes, we need to start at the basics in order to be able to move forward.

The third topic I took particular interest in was community. As a marginalized person of color living in the United States, I’ve had my fair share of imposter syndrome. I did not feel like I belonged anywhere, no one around me had many shared experiences or understanding for my culture, faith, or race. Throughout this class so far, we have been exposed to this feeling of belonging. Through the documentary, Sins Invalid, and the book, Disability Visibility, we have been able to see the power community holds and how big of a difference it makes to surround yourself with people that can empathize and understand your struggles, pain, and joy. In Disability Visibility it says, “Members of many marginalized groups have this shared experience touchstone, this sense of unexpected and vivid belonging.” (272). I found my community at Western and I remember that overwhelming feeling of belonging, of finding my family. I have come to notice that we do not have many safe spaces for people with disabilities to create communities and find empathy, comfort, and belonging with each other. I want to learn more about how we can create and use these spaces to best help the people within our community. Everyone deserves this feeling of belonging, a community to fall back upon and as a school, as a country, and in this world we need to put more emphasis and effort on creating these safe places for communities to develop and thrive in order to be a happy and productive society.

Works Cited

Adams, Rachel, and Benjamin Reiss. Keywords for Disability Studies. NYU Press, 2015. 

Wong, Alice. Disability Visibility. Crown Books for Young Readers, 2020. 

A Study in Progress: Moving and Growing Beyond

DellFrog6 Comments

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.