During this class, my peers and I encountered a reading called “Disability as Masquerade” by Tobin Seibers. As I read this piece, I could immediately picture a physical expression of the concept of masquerade and how it interacts with society. So naturally, I had to make my envisioned sculpture. Masquerade as a concept is interesting because it unable to exist without something we rely on socially, culturally, and politically: Normal. Because of its reliance on normal, Masquerade is the perfect place to begin to integrate conversations of Normal Theory into the Disability Lens. Many scholars in disability studies critique how normalcy is used to perpetuate ableism but rarely do focus on what normal is and how it functions. In our discussions in class, we, the authors of this blog, have hit on the idea of deconstructing normal. We have consistently hit a wall when attempting to come up with a way go about deconstructing normal. After some reflection, I could not think of a better place to start deconstructing normal than exploring the relationship between normal, masquerade, passing and society. This discussion inspires you to continue the exploration I started here in your daily life.
identity
The Major Project so far…
My project is a visual and touch focused exploration of how identity, society and Masquerade interact. My concept is a three-layered decorative mask, in which each layer addresses an aspect of a person’s identity and how they present this layer. As planned, currently, only one mask layer out of three is constructed and I am prepping to finish the others in the next couple of days. My main concern is the size of the masks and the dialog. I started constructing the mask with the first layer to ensure I had the room to work on details and to accurately estimate the size of the whole mask. However, the first layer ended up taller than I expected meaning all the layers will be larger than I originally planned. This will make finding the appropriate container more difficult.
As for the dialogs, I am nervous to write them. I tend to not write creatively well, and the dialogs will require some creative writing. The dialogs should lend themselves well to the audio requirements of the major project, so I will not abandon them, something I had started to consider. Honestly, this project does not feel like a class project, but more like something I decided to make for my own enjoyment. My main take away from this project is “I should do things like this more often”. Admittedly, I chose a project that heavily involves my main hobbies so any work I do on the project is incredibly enjoyable. I am hoping to keep this pace up, so I only have the finishing details left to add after the upcoming fall break.
Photos of the first layer:
I am waiting to add colors until the other layers are completed.
In Their Own Voices: Disability Visibility Review
Disability Visibility is a multi-author book filled with numerous short narratives from the perspective of those living with a disability. Separated into four distinct categories, the stories may seem overlapping in tone or themes, but not in the sense that every experience is the same. If you are to take anything away from this wonderful novel, it should be the emotional ties that are in this book between authors (that do not know one another) and the ones that are created from author to reader. An important note, and one I tend to highlight, is the inclusion of different mental and physical bodyminds. When I refer to bodyminds, what I really mean is the non-separation that exists between the human body and mind. This novel celebrates every kind of different bodymind that we typically don’t see represented in regular media (tv, movies, literature, news etc.). And with the exposure of this book, the authors represent themselves in their own voice on their own terms.
Some might wonder why such a piece of literature needs to exist, why does this matter so much? That’s a wonderful first question to have. Disability Visibility is for the humanization of those living with a different bodymind than the status quo through the artistic use of short, educational, passionate narratives. It does not serve to explain or justify everything to the reader. The authors may very well have had to feel that unnecessary burden in their life already, and that is just it. To take the time to formally step-by-step educate a reader throughout this book is to justify their existence, to strip away their right of just being. With the power of storytelling, you get moments of insight and truth like this; “Fortunately, love isn’t a collection of capacities, of practical contributions. My love isn’t diminished by my inability to carry my son up the stairs, just as it isn’t diminished by the fact that I didn’t carry him inside the uterus.” (Pg. 132). This excerpt is from one of the shortest chapters and it is written by Jessica Slice. Slice spends no time explaining any social stigmas associated with her disability, nor does she define any terms. Instead, the chapter is mainly dealing with her range of emotions and thoughts when discussing her identity through motherhood.
The novel is not an academic piece. It is written in an extremely personal manner but still reads with an energy of empowerment, passion, and wit. Through the narratives one can see the marriage between relationships in the outside world to the growing one with oneself. Author s.e. Smith says it best in their chapter claiming, “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.” (Pg. 272). Smith masterfully switches between a storytelling, descriptive perspective to a large-scale one critiquing social normalization and ableist opinions that object to what they name “crip spaces.” Each narrative provides some readers a relaxed feeling of “I’m being seen” while giving others a necessary call-in to see things in a new light with necessary self-reflection. The pieces are intimate. You feel like you’re having a conversation with the author and most of the time in my experience, the conversation does not end there. Whether you find yourself in an academic setting discussing the stories or just a group of friends, it’s almost promised the words on the pages will have you translating what it meant to you with someone else. The novel is a true love letter to identity and the human spirit that thrives off being unique in harmony with the bodymind you have. With that, I leave you with another quote by Dancer Alice Sheppard:
“I have come a long way from the brokenness of disability expected by the nondisabled world to an imagined space where the binary of “broken” and “whole” seems to exist. I look forward to learning about the effects of this thinking and to discovering what is next.” (Pg. 167).
“Reassigning Meaning”: Redefining the Disability Community
Linton, Simi. “Reassigning Meaning”. Claiming Disability: Knowledge and Identity. (New York: New York University Pressm 1998).
Summary
Linton begins by informing the reader of the disabled community’s efforts to reclaim what it means to be disabled and the terminology involved. She talks about the oppression of the disabled community, how the previous way of defining and identifying the community no longer serves purpose, accompanied by a brief discussion of how the medical definitions of disability form certain stigma in practice. Linton continues by looking at the term “disabled” as an identity marker and how the definition creates a separation between “disabled” and “non-disabled”, which should remain as a way to identify community but not to exclude others. She covers the concept of people without disabilities creating alternative language to boost the views of people with disabilities, including the term “special education” for children. Linton also discusses how “nasty words” have also been used for the disabled community and how the concept of overcoming denotes an inferiority compared to others without disabilities. In discussing the concept of “passing”, Linton covers how exhausting and minimizing that can be for someone with disabilities, and how the concept of normal vs. abnormal creates a dichotomy of self-worth and identity. She also talks about how people with disabilities are often seen as passive “victims” of their conditions, rather than in control of how they live their lives. Linton then discusses how some words have double meaning and can ascribe hurtful ideas to people with disabilities and how the connotations of the prefix “dis” come with the concept of “to be apart”. Linton concludes the writing by talking about the need to denote a socio-political axis category for which disability can be separated from its medical origins.
Direct Quotes:
The decision to assign medical meanings to disability has had many and varied consequences for disabled people (11).
Because it is physically impossible to overcome a disability, it seems that what is overcome is the social stigma of having a disability (17).
The message that I read in this action: You are like everyone else, but only as long as you hide or minimize your disability (21).
Reflection:
There is a certain desire for people to be able to put a name to something, whether to then identify with the name or to use it as a way to define and separate two entities. While this desire is natural, it certainly can create some problematic situations, as it has for the disabled community. As someone who understands science, I understand the need to create medical definitions of conditions that people have as a means to discover treatments or accommodations that can be created to give them greater access. However, I do understand that the point was lost along the way and it has instead devolved into a means of separating the abled from the disabled. I have never appreciated the exclusionary efforts of people to created spaces where people exist “within or without”, and efforts like this drive me up the wall. That people with disabilities are asked to “overcome” is a failure within itself. People with disabilities have been the other for so long that it is absolutely possible that the only time an abled child or teen has had interactions with someone who is disabled is through inspiration porn. All they know are the “overcoming” narratives instead of stories of the lives of people with disabilities or the stories they have to tell that are not specifically about their disability. And where is the humanity in that? Why do people with disabilities have to prove themselves “normal”? When growing up there is such an immense pressure to be “normal” or to “fit in” that parents have to tell a child, “It is okay to stand out!” Then when people do stand out, they are scrutinized until they feel the pressure to conform, or “pass”. As a society, we have created a mainstream understanding of how a person should look, act, think, and exist, and when someone doesn’t fit the mold, or God forbid they have a disability, they are “abnormal”. I appreciate the author’s emphasis on redefining these terms that have for so long been used as inherently ableist definitions for a faux state of being. Not only will this effort require a reshaping of the understanding of disabilities, but it will also require a redefinition of how we view normalcy. People deserve the choice to put a name to something they experience, but they also deserve the right to be seen as they are: whole.
**Note: I use the term “disabled community” because “community of people with disabilities feels disingenuous. However, I currently stand by using “people with disabilities” as opposed to “disabled people”.