disability

RAB: Imposter Syndrome and Parenting with a Disability

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Imposter Syndrome and Parenting with a Disability by Jessica Slice 

Summary: 

In this emotional and heartwarming short narrative, author Jessica Slice speaks on what it is like to go through motherhood so far while living with a disability. Slice was diagnosed with Ehlers-Danlos syndrome which greatly complicates how she moves, what environments she can be in, and daily physical activities in general. Khalil, her son, was a foster child that Slice and her husband lovingly took in when he was a baby. Khalil’s infancy stage was her favorite because their physical needs/capabilities were compatible. She got to spend an ideal amount of time with him. They were able to have physical closeness that is important to a mother and child. As Khalil grew up and entered his rambunctious toddler stage, she was not able to continue that level of closeness. More and more Khalil was mainly out of the house. As most of us know but do not acknowledge, a lot of what being a mother can be is typically emphasized on physical capability. Slice’s illness brought on a feeling of imposter syndrome because she did not meet that image of “mom” we so often see. However, she reminds herself of two important things. One, Khalil will get older and become mentally/verbally mature. He will begin to understand his mother more and her needs, as she will with him. Their bond will only grow stronger. Two, she has almost mastered the emotional and mental aspects of parenting. That is, to support, listen, and care for your own child’s mental well-being.  

Quotes: 

“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 in my uterus.” (Pg. 132) 

“He knew I was there for him, even if my body wasn’t.” (Pg. 133) 

“Years of restricted movement have trained me to attend, to slow down, to savor.” (Pg. 132) 

This one made me tear up in the best possible way. Not because I felt sad or inspired. I felt that for the first time, I was hearing a parent embrace the importance of emotional connection with their child. As mentioned previously, we tend to focus on the physical. Playing games with your child, taking them to fun places, and having nap time. It’s not that any of that is unimportant, rather there comes a point where that child grows up. Kids who do not feel emotionally safe and supported by their parents will not get on well later in life with processing difficult things. Another part of Slice’s piece I liked is how she defined what love is not. Love can never be restricted to the body when the mind within can do so much without needing every function of the body. You don’t physically see love, you feel it.  

Sexcapades of the Sinless and More: A Sins Invalid Review

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Sins Invalid is a short film exploring a performance piece put on by disabled artists based in San Francisco. The performances vary in a range of unique expression but relate to the idea of sexual freedom, beauty in identity, and loving different bodyminds in different ways. Viewers get insight on the stage performance itself as well as behind the scenes. Co-Founder of Sins Invalid, Patricia Bearne, is shown speaking to her artists and reacting to their performances before they go on stage. This BTS footage is a clear showcase of how close the entire cast can be, and how special the art is to everyone involved. The addition of various types of art forms from each artist is something refreshing for the whole audience.  

A common important theme, and dare I say tone for this show, was that of an intimate one between artist and audience. While not every piece related to sexuality or sex itself, it dealt with the human body. A different bodymind than what is mostly represented in society. With that, expect to see nudity, stories of sexual encounters, and a brief tragic history lesson on euthanasia. While some might want to steer clear of that for personal reasons, I was able to admire the honesty. It did not just feel like being an audience member, it felt like performers truly got to be themselves possibly for the first time. That is not something I think many people in general get to experience nor are willing to for that matter. As s.e. Smith said, it felt as if “All the barriers between us have fallen away” (Pg. 271) once it began and all throughout.  

One performer by the name of Matt was on stage while audio of ableist and violent statements were thrown at him. He dodges, fights back, and bleeds on stage as if the voices were assailants attempting to kill him. This one in particular stands out the most to me. The point of his work may be obvious, but I feel it can go a step further if analyzed deeper. In that moment Matt was a victim of normalization as many people are. Normalization being a set standard of what bodies should be able to do and what they should like as well as expected behaviors associated with the bodymind. I think his performance showcased this well because of the different voices in different settings that were abusing him. Normalization is a disease. There will always be one group in power enforcing it, but that groups members can be switched out from time to time. You might be thinking why that is and author Tim Dean can explain. “Normalization does not exclusively bolster the interests of the so-called normal, since it also puts them at risk” (Pg. 144). Normalization may not switch continuously, but people do change. Even if you fit into “normal” you may not always.  

The first performer we see on stage is seen taking off her prosthetic legs and washing herself in bed. During this, she remembers a love-fling and goes into great detail about their sexcapades. This was yet another favorite of mine because it begins our show with the ultimate closeness and in my opinion, empowerment. You could tell from her movement and voice it was a happy memory for her. Two parts of this I found the most important. One, the fact that someone from the disabled community was able to display their sexuality free of judgement. And two, normalizing different types of relationships such as a casual sexual one where the woman was not degraded or shamed. I believe this opening felt powerful enough to be an example of someone from the disabled community “actively owning” a space as Smith writes (Pg. 272), and I could not be more encouraging of that energy.  

Overall, this show earns a 4/5 star rating from me. One main point of emphasis felt related to the idea of de-sexualization of those with a disability. Often people wrongly assume they are asexual or call them asexual which is not only the wrong terminology (asexual an identity a part of the LGBTQ+ community is not equivalent to de-sexualization) but a false, ignorant narrative. Many people may wonder how people with physical and mental disabilities have sex to begin with. If you are one of those people, I recommend reading some literature on relationships within the disability community. Additionally, there is such a thing as medically assisted sex. Vice recently put out a piece on this titled “Inside The World of Medically Assisted Sex.” The purpose is to encourage sexual freedom and desires of those who have been restricted from it physically and socially through payment of another person to service someone. Once you’ve done some light education, then I advise you to watch this beautiful art performance if you’re into some abstract thinking.   

Falling/Burning

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Falling/Burning // Shoshana Kessock Summary:

The chapter I read was written by an author with bipolar disorder. They walk the reader through the complexities of the medical system as a creative with a mental disability. The chapter is an anecdotal narrative about their life, starting from a younger age, flying and falling and soaring and burning through the days. They share their experience with therapists, then psychiatrists, medication, then lack thereof. They sought out information about their disorder and were misinformed, under-informed, and poorly guided. The crux of the chapter is when the author explains their devastating ten year season from 2002-2012, which was ultimately “resolved” thanks to proper information and cautiously prescribed medicine.

A few quotes from the ten year period:

“Everything here is… hard, and bright, and violent. Everything I feel, everything I touch… this is hell. Just getting through the next moment, and the one after that”

“That was the illness talking”

Summary of Rhetorical Situations and Their Constituents // Keith Grant-Davie:

Keith Grant-Davie outlines what makes up a rhetorical situation in their essay, Rhetorical Situations and Their Constituents. They begins by elaborating on the wholeness of a rhetorical situation, then breaks down that wholeness into exigence, rhetor, audience, and constraints. Exigence, as defined is, “an imperfection marked by urgency. It is a defect, an obstacle, something waiting to be done, a thing which is other than it should be”. Exigence exists in a multiplicity. It begs to ask the questions: what is the discourse? Why does it exist? What should it accomplish? Rhetors are not as simple as one would think. Some may be unidentifiable and are complex and multifaceted by nature. Audience, similarly, to rhetors, could be anyone. Anyone that could potentially be the audience, is. The role of the audience is persuaded by the rhetor and discourse, but at the end of the day, it’s still a conversation and the audience is a prevalent part of the rhetorical situation. Constraints are, “persons, events, objects, and relations which are parts of the situation because they have the power to constrain decision and action needed to modify the exigence.” Constraints are preset circumstances/models that a rhetor and audience are held to.

“…where the aim is not victory over the opponent but a state of identification, where writer and reader are able to meet in the audience identity the writer has created within the discourse” 

In Reflection of both readings:

I found this chapter to be a accurate testimony to how mentally disabled folks navigate through life, in relation to creativity, medication, school, motivation, and frustration. It’s a tale so personal to this author, but true for many others. Through the scope of a “rhetorical situation”, the rhetors Shoshana Kessock, Alice Wong, and potentially others I am unaware of (are unspoken), are constrained by the length of a chapter, the english language, the obstacles of presenting a story as a disabled person, and the audience‘s knowledge regarding bipolar. I believe the audience extends much further than myself. The rhetorical choices made by the author lead me to believe that they hope struggling disabled authors to read their story. They persuade inspiration and hopefulness.

In Sickness and In Difference

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(I apologize in advance but I am doing two essays. I figured a few of us might choose one of them, but I still wanted to give my thoughts on it!)

CW: Sex toys

Keisha Scott’s “Last but Not Least- Embracing Asexuality”

Jamison Hill’s “Love Means Never Having to Say… Anything”

“Love Means Never Having to Say… Anything” begins with Jamison Hill’s desire to say “I love you” to his partner, Shannon. Hill recounts the times when he thought he was in love with previous partners, when he could still speak and have conversations with them, before defining his condition of myalgic encephalomyelitis, a condition that keeps him bedridden and unable to speak. Hill continues by speaking about how he had met Shannon and how their shared condition turned into a relationship, and how that relationship between two sick people can be just as good as a relationship between a sick person and a healthy person. He talks about the way they take care of each other and share their lives together without vocal conversation and he ends with his painful attempt to vocalize his love. The essay finishes with his failed attempt, but Shannon’s understanding of what he wanted to say.

“Last but Not Least- Embracing Asexuality” begins with Keisha Scott’s recounting of always being the last person to hit milestones. From her blindness, to getting her period late, Scott tells of how she felt different from everyone around her, but she desperately wanted to be a woman. She continues with talking about how all of her friends were interested in children, boys, and having sex, being jealous of the attention that her friends got from men, and the desire to gain respect by finally becoming a woman via getting her period. She talks about how she had started by conforming to gender norms for women but was still late in the process, how she first experienced desire to when she first saw porn and masturbated. Scott recalls being disillusioned with the concept of sex, how nothing felt right and that she took a while to understand the sensation of sex. Scott then talks about buying sex toys, dodging questions about sex and relationships, and feeling a “wrongness” that she didn’t align to societal norms. Scott continues by talking about how she took a course on feminism and sexuality and how a conversation about sexuality and disability made her to begin questioning the meaning of “asexuality”. Scott ends the essay by researching asexuality, finding peace in the narratives she read and explaining that she has no desire for sex or children, contrary to what the world around her says.

Quote Bank:

“When we are together, we spend weeks in bed, mostly holding each other, our bodies aligned like two pieces of broken plate glued back together” (Hill, 263)

“These failed romances remind me of the baffling incompatibilities two people can have, but also how love can transcend even the most insurmountable obstacles when you find the right person” (Hill, 264).

“I had never thought about it like that- the possibility of two sick people being in a successful relationship together” (Hill, 265).

“I started to read more on asexuality, read personal stories of others- both disabled and able-bodied – who were completely fine: some were married, some had kids, some have sex once in a blue moon, some have never had sex, some were single” (Scott, 127).

“I already faced discrimination and ableist views from society in so many other ways; I couldn’t bear it if my sexuality ended up being determined by my disability” (Scott, 127).

Reflection:

I chose to do two analyses because I identified so strongly with one, but I also understand that it might be a popular choice in our cohort. So firstly, I will talk about Jamison Hill’s “Love Means Never Having to Say… Anything”. There is a societal pressure that in relationships, certain things *have* to be performed. A romantic first kiss, a declaration of love, a passionate urgency in the early stages that gets rekindled over time. I think that Hill does a great job in subverting these expectations through his writing of his relationship with Shannon. He acknowledges that kissing next to your expended body fluids is not the most romantic thing, but for two sick people, it works because there is a mutual understanding of illness. He might not be able to vocally say “I love you”, but the ways in which they take care of each other are acts of love in themselves, not needing to be spoken aloud. As someone who is a hopeful romantic, I understand to the depth of his definition of “two broken plates glued back together”. There is a fascination with perfection in relationships as well, everything has to appear perfect at all times to the world because no one should know if you have tension in your relationship. However, Hill defines the two of them as broken plates, something deemed by society as “apart”, but together they are “whole”. While they might not be “broken” in the same way, it is through that brokenness that they find wholeness together. The art of *kinstugi*, or repairing broken pottery with gold, allows the artist to highlight the brokenness through something beautiful, and I think that is exactly what Hill has done in this essay. He has taken the brokenness and uniqueness of two people and shown how together, their love and understanding is so beautiful it is beyond words or expectations.

“Last But Not Least- Embracing Asexuality” is one of the most relatable pieces of writing I have read all year. Aside from being blind, the bulk of Scott’s essay was a reflection of my own experience with having chronic illness and discovering my sexuality. As a whole, Scott talks about the dual struggle of being different from her blindness, but then also not having the same feelings and desires as her peers. I have written about the concept of asexuality and disability before, but I will reiterate the point that those who identify as asexual are even more likely to be ostracized in the spaces they occupy. For one, if they are in heteronormative spaces, it is possible they will be ostracized for being disabled. But in disabled spaces, where people with disabilities have fought to be seen as regular sexual beings, asexuals are more likely to be ostracized for not pushing the sexual narrative. There is a unique difficulty that presents itself in these spaces as is, but to have a sense of dual-difference is even more challenging. Despite all of this, I cannot help but feel so validated in Scott’s narrative that she created. In a world that is simultaneously so sex-forward but prudish towards the expression of sexuality, to have any sort of dual-identity with asexuality can be a very lonely process. I can certainly identify with her finding peace in the stories that she read of other asexuals, and it brings me peace to read her narrative. From a disability studies standpoint, I would absolutely recommend anyone studying the intricacies of intersectionality to read this essay. It does a fantastic job at weaving together the truths of gender performance, societal expectations, sexuality, disability, and the general sense of belonging that plagues our existence.

Crip Spaces: Sexual, Fulfilling, And Revolutionary

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Summary of Sins Invalid

Sins Invalid is a short documentary about a performance team of artists portraying their understanding of sex and disability – as disabled, sexual beings. The team is made up of an entirely disabled cast and crew. Throughout the documentary we see live performances as well as interviews of the crew members. Performances range from dance routines and singing, to poems and short plays. We get to know a bit about the crew and their experience navigating sex as a disabled person in a world that dismisses or fetishizes sex. The documentary celebrates queer, disabled and identities of color through an artistic lens. 

Quotes:

“This is precisely why they (Crip Spaces) are needed: as long as claiming our own ground is treated as an act of hostility, we need our ground” (Smith pg. 274)

This quote ties in well with Sins Invalid and the need for performances like theirs. There are countless sexually-charged shows, but how many include disabled bodies? How many are accessible for disabled patrons? The organization provides an opportunity for the performers and viewers to feel safe, seen, and validated. Not only that, but Sins Invalid provides a space that disabled folks can actually show up to. The moment from the film I am drawn to is at the very beginning when the audio describer/host(?) is explaining who Sins Invalid is and what they stand for. The disabled voice of color celebrates disability and praises the sexual queerness of people. 

“…we might conclude that it (the way disability and sex is misconstrued) is because sexuality is always a site of deep-seated anxieties about normative forms of embodied being” (Shildrick pg. 165)

This quote speaks in tangent with our class conversation about feeling uncomfortable. Sex is not for everyone. Additionally, not everyone has a positive relationship with sex due to lived experience. It is not a good or essential aspect of many lives, however, I will challenge the discomfort for those who come from a cultural/religious place of taboo and anxiety. If sex is taboo for “normalized” bodies, how are we digesting sexuality within disabled bodies? How are our discomforts and anxieties being projected on those who society deems “abnormal”? I am brought back to the scene in the film when the woman who uses two prosthetic legs is on stage while a narrator graphically explains a sexual encounter. I don’t believe this performance is intended to be a dichotomy; her disability is not in opposition with her sexual experience, but rather in tangent. Our discomfort may be projected onto her not having legs, when realistically it may come from a place of insecurity and social taboo regarding sexuality.

Reflection:

In reflection of the readings and this film, I feel at ease, but not complacent. I feel hopeful and full of questions.

 I find the concept of “Crip Spaces” absolutely essential, both in my own life, within my identities and for the well-being of humankind. I hope, moving forward to find spaces for myself that embrace my queerness (in all meanings of the word). Likewise, I hope for disabled spaces, Black spaces, Indigenous spaces, spaces of color and tongue, trans spaces, survivor spaces, and beyond. Shameless plug, an online platform that amplifies these folks is SaltyWorld. I would highly recommend checking it out for all identities.

Rating:

My bias leads me toward a 5/5 rating. Despite the documentary being lower budget I believe it was artistically brilliant, socially impactful, and overall well done. 

Performance and Expression

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The film Sins Invalid is a contemplation of performances from a show by different artists in the disability community. Poets, dancers, musicians, and actors come together on the stage to create a raw and pure performance of emotion. Expressing, not only their identity, but their sexuality, race, and experience as being disabled in an honest way. Between performances, there was commentary on the creative process and experiences the performers had while creating and performing their acts on the stage for live audiences.

Something I made a connection to between the film and the Keywords for Disability Studies books was sexualization. In the chapter about race the author writes, “For instance, the public’s morbid fascination with the sexualized bodies of Saartjie Baartman, the South African woman known as the “hottest Venus.””(146). It was common in the past for people of race or disability to be sexualized in a negative, unwanted way by the public. In this film, we see people of different race and disability reclaiming their sexuality and how they feel about their bodies, despite the opinions and misconception of others. The other connection I made was to the chapter about the topic of the word queer, “”Queer” opposes not heterosexuality but heteronormativity-the often unspoken assumption that heterosexuality provides the framework through which everything makes sense.” (143). Not only does the film challenge misconceptions of disability but it breaks down heteronormativity, opening our eyes to other people’s sexuality, sex, and experience that should be but is not viewed as ‘normal’ due to the concept of heteronormativity.

I really enjoyed watching this film. To watch people own their identities, to stand on a stage and listen and watch them proclaim their truths and who they are was incredibly powerful and inspirational to me. Each performer told their story, their experience and how they see themselves and their body. It just felt so raw and honest to me and I really loved that. I think this film is also incredibly powerful because it changes the perspective of the viewers. It breaks through the misconceptions and stereotypes that media and society have created about the sexuality and lives of people with disability. I find that incredibly impactful.

4.5/5 Stars

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.  

Margrit Shildrick: Disability and Sex

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Summary:

The author begins by explaining how the world sees sex: a paradox of too much or too little, of joyful or shameful, of scientific or pleasurable, of normal or not. After giving cultural context, they elaborate on how disability and sex are at play. Disabled folks don’t have access to sexual education which only amplifies a negative stigmas both within and outside of the disabled community. They then go on to explain why sex and disability are such a tricky intersection (quote number 2) and how it stems from a cultural anxiety regarding sex and the body. They break down the Deleuzian model and emphasis the importance of navigating desire opposed to embodiment. The author reinvents the widespread understanding of what sex/sexuality is. Lastly, they explain the relation to queer and disability studies in action. The closing of the chapter summarizes the issues of how sex and disability is viewed and where we can advocate going in the future.

Quotes:

“…disabled people, like everyone else, understand their sexualities in multiple different ways, which do not fit easily with the convenient models of social management” (Shildrick pg. 164)
“If those who count themselves as nondisabled have laregly disavowed the conjunction of disability and sexuality, experiencing what can only be regarded as the “yuck factor” when faced with the realities of sexual desire in all their anomalous forms, then 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)
“…understandings of disability and sex have encouraged scholars and activists to confront questions of embodiment, and more specifically, the circulation of desire” (Shildrick pg. 165) *so good*
“…the term “queer” goes much further in being explicitly defined as against all forms of normativity” (Shildrick pg. 166)

Reflection:

I loved this chapter (I know that isn’t great analysis, but I just have to start with that). It went well in tangent with some of the queer theory work I’ve been reading. The author emphasized the need to tear down stereotyped preconceptions of sex (both within and outside the disability community). They provided alternative definitions of sex and embodiment, which I see as a powerful tool for advocacy. In addition to explaining the tangible intersections of sex and disability, they dove into the heady complexities of challenging everything we’ve been taught. I also appreciated the type of language the author used; very plain, with lots of examples.

Disability and Race

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  • Race by Nirmala Erevelles
  • This essay is about the direct connection people make between the experience of people of color and the experience of people with disability. Erevelles walks the reader through the pros and cons of this. The author’s argument is that essentially by saying ‘disability is like race’ people are trying to push disability into a broader social recognition as a political minority. Erevelles continues to explain how this has assisted the Disability Rights Movement in moving forward but at the same time created violent and oppressive overtones for disability. She then comes to a conclusion, “Thus, more robust and complex analyses of race and disability are necessary for us to move beyond the initial conceptual space of analogy.” (Erevelles, 148).
  • I found this essay intriguing, especially as a person of color. I thought it was interesting how the history of disability and race lined up in some ways. For example, Erevelles writes, “They were transformed into spectacles for popular consumption and economic profit” (Erevelles, 146). The best example I can think of this is circuses, originally the circus was a compiled group of ‘freaks’ from around the world. These so-called freaks were people of color and people with disability, put on stage for people to make fun of or laugh at, even sexualizes, so others could make money. I understand why disability and race should not be made a direct analogy, in my mind it belittles both group’s experiences, but I do see how making connections like this help us empathize, learn, and understand each other further. I think another thing that stood out to me was the fact that institutions mix race and disability into one big category, specifically in schools. Erevelles writes, “Special education classes became the spaces where African American and Latino students were ghettoized” (Erevelles, 147). This was something I could connect to because people with color and disability were immediately grouped into the special education classes, and that is one thing that I experienced throughout my life that I look back on now and see as problematic.

Reflective Annotated Bibliography: Corbett Joan O’Toole “Celebrating Crip Bodyminds”

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Celebrating Crip Bodyminds

By: Corbett Joan O’Toole

Summary:

In this piece, O’Toole discusses important concepts from specific terminology unknown to the general public and why it matters, to finding community within the vast vibrant culture of disabled bodyminds. They introduce the idea of social support through creative problem-solving for those with a disability potentially taking from both a cultural and social model of disability. Having conversations with others going through similar experiences is extremely vital. This being beneficial for the sake of learning to adjust to the constraint’s society (an ableist society) has placed upon people living with a different bodymind than the status quo. Specifically, discussions can range from coping with side effects from medication to economic hardship and much more. In this instance, O’Toole refers to disability-specific circles that highlight pride and strength alongside their disability rather than in spite of it.  

An important note, O’Toole reminds us that the medical community often never knows about these circles so fails to adjust to more appropriate language and a different perspective. The author uses a short anecdote about women not knowing how to identify on the spectrum of disability because they were never provided information about it. I believe this sentiment is one we come back to throughout the introduction of this book. Social support systems within a large community that is for the community. Using agreed upon terms that challenge, compliment, or otherwise intersect nicely with identity. Not only acknowledging this, but also realizing where they lie and how they are not represented or respected by people outside of those social groups.   

Quotes: “Their quality of life goes up because, often for the first time, they are surrounded by people who see their wholeness, in contrast to the medical system that primarily sees their brokenness.” (pg. 5)  

“…They didn’t have any language for being disabled, so they were isolated in their own worlds.” (pg. 4)  

“It seems as though the role of “miracle worker” conflicts with the role of “disabled person”” (pg. 29) 

Reflection:  

One main message I received from this piece would be in relation to how culture shapes a social reaction or view of disability and how intertwined they can be. Narratives that surround the disability community as the author pointed out can revolve around anything but accepting the disability. Stories and beliefs held are related to wishing for a cure or achieving greatness despite a condition. If our belief system rooted in ableist rhetoric was to be altered, then accessibility in society might be better. One small example would be education or careers. Someone with a disability might not get hired because they are deemed incompetent. In school, teachers often will not adjust curriculums or programs for a student to learn in the way they can so are viewed as “less.” The people are competent but are unfortunately in an incompetent society that refuses to extend accessibility to others’ needs.  

The second message I believe is important would be regarding narratives specifically and the language we use. I often hear people make the claim that semantics don’t matter. They could not be more wrong. O’Toole briefly mentions in their work that they felt getting judged for how they were as a kid felt the same as being judged for who they were entirely. A medical model may tell someone what they are missing and what is wrong with them to attempt to provide a solution. The author brings up different social groups that do the opposite. These groups focus on change in society for the better, empowerment, experiences of different bodyminds and how to cope in different ways. While I still actively learn about the differences between the groups listed, it is apparent to me that they are a source of peer power in the community regardless of each unique focus. Among them are: Disability circles, disability justice groups, and disability rights organizations. The language used in each one will range but it is important that it is vocabulary/terms they all agree on. Language that promotes mutual respect, understanding, and patience. That idea has not yet made an appearance in mainstream literature or media for the most part when discussing disability.