disability culture

In Their Own Voices: Disability Visibility Review

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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).  

RAB: Disability and Queer

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“Queer” by Tim Dean, selected from Keywords for Disability Studies edited by Rachel Adams, Benjamin Reiss, and David Serlin

Summary: 

This piece introduces the historical connections between queer studies and disability studies by first discussing the word queer. Originally, queer was used as a derogatory term to stigmatize not only members of the LGBTQ+ community but those in the disabled community too. Now it is decently well-known as a reclaimed term for empowerment. Dean points out that both queer studies and disability studies challenge the effects of normalization in society when it comes to identity and access. When I say identity, this can include sexual orientation, gender expression, physical appearances, personality itself and much more personal attributes. One example given comes from early activist groups and their slogans. Queer Nation began the chant “We’re here, we’re queer, get used to it.” And it was common for disability rights organizations to chant “Not dead yet.”  

Then, the term heteronormativity comes into play. Queer itself, is not supposed to challenge or simply be different from heterosexuality, as it challenges heteronormativity. The way Dean explains heteronormativity relates to heterosexuality because it’s based off covert expectations that makes sense of the world. The term is linked to another concept created by Adrienne Rich (lesbian feminist) known as compulsory heterosexuality. Dean claims that compulsory heterosexuality depends on compulsory able-bodiedness. Heteronormativity assumes that a body engaging in sex is healthy and able-bodied to fit the idea of “normal.” Lastly, the concept of “crip theory” is introduced because of its influence from queer and disability studies. Instead of focusing on physical aspects and capabilities of bodies and environments around them this field goes one step further. It wants to take a deeper look at abstract social expectations of what the human body should look like and how someone should behave or perform daily due to heteronormativity.  

Quotes: 

“Indeed, able-bodiedness appears to be even more compulsory than heterosexuality because the former requires the latter” (pg. 144) 

“Queer approaches to thinking about disability and sexuality argue that neither the human body nor its capacities are biologically determined” (pg. 144) 

“In other words, normalization does not exclusively bolster the interests of the so-called normal, since it also puts them at risk” (pg. 144) 

Reflection: 

One thing that I focused on was the idea of normalization. I like how this author framed it, and the references he provided when discussing it piece by piece. While I can’t be positive I fully grasp it from this reading, including Goffman’s take helped. If I’m following correctly, normalization could be a framework that anyone is capable of straying from. That goes to say that anyone is capable of later in life becoming disabled, therefor being stripped of their “normal” social status. I would also argue that while I view a standard normal as being the straight white able-bodied male (and doubtful that will change soon) I think norms can sometimes exist on a continuum. We create new norms and once those are established if you don’t fall in line or can’t make the cut, you are not normal anymore. Normalization is an identity vacuum that exists to continuously eradicate accessibility, education, and mutes every minority.  

Secondly, something this piece reminded me of is the power of taking back hurtful language. Growing up, I vividly remember learning as a young child that “queer” meant weird. It meant different, gross, and was not a word to be associated with. Being a member of the LGBTQ+ community and being able to then grow up and see us take back these terms for empowerment meant a lot. I never knew queer studies and disability studies had this historical, powerful link in that way. Typically, I always emphasize how crucial vocabulary can be, and this author solidified that more for me. It’s not just how we speak about identities but how we don’t speak about them as well. Having learned some bits and pieces of queer history it’s saddening interconnections to other communities like this do not get mentioned or credit.