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