Author: Isabelle S

Space, Sexuality and Beauty: A Disability Studies Composite Essay

Isabelle S3 Comments

Disability studies at its most basic definition is the study of disability, which goes further in depth into the different life experiences of disabiled people, the nature of “normal”, the necessity of accommodation, accessibility and accurate representation, and the social, economic and systemic implications of being disabled. Applying these lenses to the disabled experiences reveals a lot of the individual facets that make up these experiences, and also how challenging smaller things could be. This is interesting too because in a way I am applying a lens to a lens itself. Disability and ability is a lens that I love applying to stories, it tends to reveal a lot about characters and the world that they occupy, although unfortunately there is a lot of negative representation out there as well of disability. I’ve been noticing a lot of the Baader-Meinhof Phenomenon, or Frequency Bias, where I notice a lot more often things I previously only gave a passing glance at. Accessibility, accommodation, social norms, and many other aspects that we’ve explored in this class so far, have all become observed more in my own life. 

As we move forward in the class, I want to look more into how the standard of today came into being. What made people think we needed a “normal” and “abnormal”? Additionally, if it weren’t for the existence of normal and abnormal, in what ways would the definition of disability change, what would the disabled experience become? Would it change or stay the same? As the world has been built and expanded upon, and with populations increasing exponentially and countries and laws having to shift to accommodate so many people, I want to learn more about the specific histories of individual disabilities. How did so many different people get left behind, lost in the cracks as society adapted and progressed forwards? And what ways could change be brought about to help these individuales? What role has capitalism and its ideologies played in this? How different is the disabled experience in other regions of the world? I also am looking for ways to better represent disabilities. As someone who wishes to author several works, I want to be able to portray disability accurately, without falling into any harmful pitfalls or stereotypes that such perspectives usually fall into. I know how amazing it could be to see yourself in a piece of media, especially if you don’t usually see yourself represented often or accurately. I want to be able to provide that for someone, as an author, and what I could do best is research and learn more about these specific identities. 

Sexuality

The intersectionality of sexuality and disability is really fascinating. I was at first hooked by Robert McRuer’s section in the Keywords for Disability Studies reading, where he explored, “What Foucault understood as ‘proliferation of discourse,’ ‘ability’ and ‘disability,’ like ‘sexuality’, materialized as supposedly knowable entities. The emergence and naturalization of these discourses positioned sexuality and ability not only as culturally and historically specific modes of experience but also as cross-temporal and in some cases even universal components of what it means to be a human being” (McRuer 167). In a terrifying sort of way, sexuality and a person’s sexual abilities could quite literally be used by others to determine a person’s ability to be, well a person. Disabled people often face a stigma surrounding their own sexuality, something that is a very personal topic of one’s identity. McRuer explores these dramatic stigmas more as well. “Like ‘homosexuals’ more generally, disabled people were subject to pathologization and normalization. ‘Abnormal’ sexuality, for instance, was understood to be the cause of, or at least be related to, illness and disability, such that ‘abnormal’ embodiment was often understood to be accompanied by ‘abnormal’ desired and (consequently) an ‘abnormal’ sexuality A long standing belief that certain disabled people have ‘excessive’ sexual desires and thus an excessive sexuality emerges from this linkage” (McRuer 168)

This is particular, coupled with and heteronormativity puts a lot of pressure on quite literally everyone, even if a person is aware of it or not. The implications of this analysis is further expanded upon as McRuer explains it connects heteronormativity to an abled individual. “Discourses of homosexuality manterialized a ‘new species’ of a person. This new ‘species’ was increasingly regulated by the state over the course of the late nineteenth century and into the twentieth century (Canaday 2009). Heterosexuality in turn, solidified as the identity of the normal and healthy dominant group, and ‘hetersexuals’ began to understand themselves as such” (McRuer 168). This connection intertwines queer and disabled communities together, especially as we look at the historical oppression of disabled people via reproduction. Both the queer community and disabled community face many dangers in the face of the moral debate regarding eugenics. Additionally, looking at the history of queer identities and how they were often still are identified as mental illnesses, the two communities intersect even more. 

Yet, it is important to acknowledge that these two identities, while they intersect, do not dictate each other. My reading from Disability Visibility, written by Keshia Scott, explored how her blindness often led to people assuming that her asexual identity was soely determined by her disability. She rejects this notion, reaffirming that the two led to a very unique life experience and perspective, but that her sexuality is not a product of her disability “I already faces discrimination and ableist views from society in so many other ways; I couldn’t bear it if my sexuality ended up being determined by disability” (Scott 127). The topic of sexuality and disability has lots of overlap, which we got to look at a lot in this class recently, and getting to see the ways that they interact with one another was very eye opening.

Beauty

Somewhat expanding on the role of sexual ability being determined by abled bodies, I want to look more at how beauty and disability interact. Specifically with the rise of the “ideal body” image that social media and the entertainment industry has developed and perpetuated. I’ve linked two articles from Time and BBC that talk about research around social media and body image, but there have been many physiological studies that determine that social media has negatively impacted many people’s self-image. The idealized human body has changed over the years. Through my own observation, the development of tools like photo editing and face tuning, as well as an emphasis on advertising the self, or displaying the self on social media — usually done with perfect lighting makeup and filters to create an unattainable image — has negatively impacted the way that we see ourselves today. Beauty standards have always been arbitrary throughout history, and it is now when the human mind has adapted to perceiving the human body to be these unattainable images of perfection that our views of reality are distorted. Physical disabilities and the confidence they bring to the table when faced with these standards face a heightened sense of unattainability. Like McRuer suggests, the ideal — or at the very least typical — body is abled. On top of this, many disabled individuals, with their individual perspectives, often question the standards of beauty, especially when they as individuals might not be able to, nor want to do the things required to reach the standards of beauty. For instance, Keshia Scott explains how, “I didn’t start shaving my underarms and legs until I was seventeen. I did it for the worst reason: because my friends were doing it. My legs have not had that soft, smooth, untouched feel ever since, […] I will never forget the feeling of shame of not being the ‘right kind of beautiful’ when a friend of my brother asked me why I didn’t shave — and then proceeded to tell me that I really, really should” (Scott 122). This really struck me, and made me consider how people may also have difficulty shaving due to sensory overload, or who may be judges for scars, weight, and wheelchair, and other physical impairments. 

Spaces- Accessibility and Acceptance

One of the most resonating readings for this class was the S. E. Smith reading about spaces made for and by disabled people, and how her first experience occupying a crip space that wasn’t a hospital was. “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” (Smith 272) She explains that crip space is usually hospitals, which as a more clinical space was very different from witnessing a show made for disabled people, by disabled people. Where disability is the norm. “Some can remember the precise moment when they were in a space inhabited entirely by people like them for the first time. For disabled people, those spaces are often hospitals, group therapy sessions, and other clinical settings. That is often by design; we are kept isolated from one another, as though more than two disabled people in the same room will start a riot or make everyone feel awkward (Smith 272) But in the theater, abled people are the minority. It’s common for her to see canes and wheelchairs, ASL interpreters, a blind audience member traces their hands over a model of the stage. 

The key here is that disability is not just seen, but celebrated and embraced. There’s a sense of pride in these gatherings. The show caters to disabled people and their experiences. What also stood out was how, “It isn’t that nondisabled people are unwelcome at this dance performance. But the space has not been tailored to their needs and designed to seamlessly accommodate them, they stand out. The experience pushes the boundaries of their understanding and expectations” (Smith 273). The phrase “tailored to their needs” really stands out here, as in most of the world, space is often created with nondisabled people in mind. So occupying a space where your needs are met, and you are accepted and celebrated, is so very important and beautiful.

Here are two articles on beauty as its presented online, and how it has lowered self esteem:

https://www.bbc.com/future/article/20190311-how-social-media-affects-body-image
https://time.com/4459153/social-media-body-image/

Bridge the Gap, See the Future, Disability Visibility Review

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The pieces functions through very personal stories, the real lived experiences of the authors. There is usually one or two common themes in these stories as the author places the disability lens over certain topics. They usually present the problem: marginalization, impostor syndrome, facing oppression and othering, and end with a fairly positive outcome of their experience. Most of these outcomes are internal, of acceptance or finding a community, with some expressing a call for change, to provide to charities and to open up the line for conversation and in-depth discussion.

The book features diabled stories, but could be especially valuable to abled people as well. For the book’s disabled audience, it serves to be a sort of crip space, where stories of disabled people are open to be shared in all their complexity. For the abled audience, this book serves to be both informative, by making an effort to share these stories and call to action that change that has to be made to accommodate disabled people. It explains how accessibility would help everyone once it is achieved. Through innovation, contribution, research and spreading awareness, disabled people would not only be seen, but also heard and accommodated for. 

It explored the complexity of allyship, found within family, friends and in the workplace, although the latter of the three is more in light with the importance of accessibility, and the awareness of the advantages and disadvantages of everyone who occupies a space. When it comes to fields and the workplace, employers keeping an openness to disability would only serve to welcome new perspectives into the workforce, Wanda Díaz-Merced shares her story with her unique perspective, “I think science is for everyone. It belongs to the people, and it has to be available to everyone, because we are all natural explorers” (172).” Not only is the workforce in need new voices, but there are many social aspects of disability that people ought to learn more about. 

Alternative options for disabled people to participate in traditions that usually abled people could participate in without issue. Maysoon Zayid explored such limitations, saying ““I miss fasting, but I’m happy to take on my newest mission of reminding those who can’t fast that there is no reason to put themselves at risk. Muslims fast so they can suffer a little. It is important not to die in the process.” (Pg. 38)” The physical availability of the world is also of importance, Sandy Ho  explains that, “As a marginalized disabled person I want it all: for all of us to remain as fixtures in our shared worldviews, for the space to do more than survive, and for our voices and presence to experience the indelible freedom that comes with being louder.”(116) The world has perpetuated the idea that the abled person is to be catered to whilst disabled people must struggle to find spaces for them to be allowed to fit in, this book explains how backwards that logic is in the most personal of stories.

Disability Visibility: Last but not Least – Embracing Asexuality by Keshia Scott

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Scott explains her discovery of her asexual identity in this story, and its relationship with her blindness. She explains that she was always the last of her friends to achieve life milestones, and how as an impressionable teenager she had many insecurities and wanted to fit in with her friends. She was surrounded in her teenage years by other disabled people, and her insecurities about her appearance were amplified by her friends’ ideas of what the ideal woman was like. She explores her lack of interest in men and how throughout her life she has felt indifferent about sex. Many of her experiences with men that she recalls consist of groping and sexual harassment, and as she grew older she has felt more anxiety about explaining her life choices: to not be married, have kids, be sexual with other people. 

She details her discovery of pleasuring herself and the term asexual. She had a conversation with a classmate who said, “disabled people are either asexual or hypersexual” (126), and at first she was taken aback by the blatant ableism in this discussion. Later, she did more research about asexuality and realized that she had the wrong idea in her head about what asexuality was. Now she uses the term and has talk some friends and family about her identity.

At the end she explains her happiness with her independent life. That she is at grad school and many of her friends have taken different paths in life. At the end she explains, “The thought of sex is still uninteresting to me, the thought of having kids is still unpaltable to me, and still, all the time, learning what it is to be a woman, with all that this entails. I look forward to what happens next. And every day I’m still smiling.” (128)

There is a lot in Scott’s writing about the connections between disability and asexuality, which I found overlapped with a lot of what the keywords reading also talked about, that queerness and disability often go hand in hand. Howveer, what Scott and many other people in the asexual and disabled communities often points out, the two occur on their own. There is intersectionality to these communities, but they are not one in the same. Scott even discusses this, that she, “ couldn’t bear it if [her] sexuality ended up being determined by disability” (127) Asexuality could often be misdiagnosed as hypoactive sexual desire disorder, and many people on the autism spectrum also face a lot of stigma by often automatically being labelled as asexual. I’ve found too that in the asexual community there was at one point an effort to disconnect asexuality from disorder, but there was also quickly push back against this as asexual people realized that there was overlap in the communities and to try to fully separate them was to disregard disabled asexuals. 

Asexuality is very fluid, with different people falling into different levels of attraction, both sexual and romantic, so seeing Scott’s own detailed account of her relationship with her sexuality was very eye opening to me. And I am glad that she as a disabled asexual has written about her relationship between these two identities.

The Artist’s Embrace of Oneself

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The documentary provided a raw, poignant view of the creative process of disabled performers who took the stage in 2012 to share their stories as disabled people. The yearly show explored disability and race, gender, sex and sexuality, and featured many artists of color and LQBTQ artists. The documentary itself, fully titled Sins Invalid: An Unashamed Claim to Beauty in the Face of Invisibility, was directed by one of Sins Invalid’s founders Patricia Berne, was released in 2013 and detailed the performances’ development, the performers’ thought process behind their parts, and the importance of such a show. 

Sins Invalid features a variety of acts, with some done entirely independently and solely for the performer. In one performance, a disabled man takes a bath and uses a sponge to clean himself. The performance is done entirely alone and independently, which a few of the other more intimate performances do. However, what really stood out to me was the performances that had multiple people in them. One performance features Nomy Lamm, a singer and amputee, dressed in a bird costume in a nest of human prosthetics. She layers her voice to create a song, and is soon joined by another performer who clasps hands with her. The performance is heavily symbolic, and has a huge focus on unity and community. The importance of group performance is emphasised in Keywords for Disabilities, “Performance”, where author Petra Kuppers explains that such performances, “moves out from the individual and towards communal action, and a staged performance becomes a way of presenting disability in public” (138). The final performance featured in the documentary starts with a man in a wheelchair being caught in a fight between a bipedal individual. It is halfway through the performance when this individual disappears and the man in the wheelchair is lifted into the air, using his arms to hold himself atop a wooden beam. The performance ends with the projection of a cross over his form, evoking imagery of crucifixion. This performance is a result of the combined efforts of group and individual performance, and conveys a harrowing connection of abuse and violence on the disabled community. These performances, which we see the behind the scenes of in the documentary, are performed annually, with different stories and performers taking the stage each year. 

“This space[…] is for me” says E. E. Smith. The concise declaration really doesn’t beat around the bush. These spaces, these performances, are one of the few spaces for the diabled to feel fully welcomed and accepted. The in-your-fact descriptions of sex and sexuality, of the instability of their place in an ablist world, the fear or violence and containment, they are not only necessary — to be seen and heard —  but they mirror many of the worldviews that the audience holds. 

There is something powerful in finding yourself surrounded by your community. A magical sort of emotion as you feel true belonging in the face of invisibility and oppression. When you talk to a stranger about your personal experience and realize that you are not alone; they feel what you feel and think what you think. That you no longer have to hide. Much like the audience in Smith’s writing, the audience of Sin’s Invalid would become a part of the performance itself. Not only do you see the unfiltered performances of diabled people, but you are a part of the space itself, with each audience member having their own unknown — and previously unacknowledged — stories.

Sins Invalid emphasises that the performers do not perform for the audience, and rather are performing for themselves, to create art not for it to be objectified by a view, but instead encompassed in the minds and bodies of the artists. Performing for yourself, for the sake of expressing yourself, is an extraordinary way to create art. Artists are often uncomfortably aware of their audience, and this usually impacts the creative process in some way. What will the viewers think of this? Will they accept it? Will they hate it, jeer and boo me off stage? The artist freeing themselves from the expectations put about by the audience are able to focus solely on their art. And for the case of Sins Invalid, this resulted in an enchantingly unashamed show.

It is impossible for film to capture the experience of seeing the live performance. There is so much different about being there in person, seeing the entire expanse of the stage and feeling the entire room vibrate with the voices of the performers, to see the curtains sway open and closed, that cannot be truly captured in film. The act of becoming one with the audience could even itself be a part of the performance. Actors could enter the audience, break the fourth wall, there are even performances entirely made up by the audience. John Cage’s 4’33” is a completely silent musical performance, where the sounds of the auditorium make up the music itself. The audience’s breathing and shuffling, quiet whispers and coughs. Being a part of the audience completely changes the experience, so I feel like as a viewer of the film, I have yet to fully see the true performance. Because of this I give the documentary a four out of five stars.

Keywords for Disability studies, “Sexuality” by Robert McRuer

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The section for the keyword “Sexuality” discusses the connections between sexuality and disability. Specifically, with how queer identities mirror and often overlap with disability. The historical role of queer identities being labeled as disabilities heavily ties into the role of the “abnormal sexuality”, which McRuer explains connects the physical differences of disabled bodies to “abnormal desires”, which results in the abnormal sexuality. (168) There is a stigma around people with “abnormal sexuality” having excessive sexuality, which also contrasts with the stigma of some disabled people being seen as non-sexual people, often being initialized as well. 

McRuer discusses the historical impact that “shock therapy, sterilization, and castration”(168) have had on these communities. McRuer argues that a newer mindset has emerged that discusses alternative sexual experiences, and how this as diverged from a hetersexual/homosexual binary. McRuer quotes Foucault, who “famously insisted: that homosexuality materialized a ‘new species’ of person” (168), and examines how this “new species” would be increasingly regulated by the state for many years. 

The queerness of disability itself has challenged heteronormativity, which McRuer argues almost requires able bodied-ness. McRuer ends the section reflecting on how sexuality has continued to oppress disabled people, “but it has also become a profoundly productive site for intervention, experimentation and transformation”(170). I think this really reflects how in-depth discussion has brought this aspect of disability forward, and how continued discussion and awareness of these topics are vitally important marginalized communities. 

One thing that really resonated with me is connecting queerness to disability. Specifically the author categorized heteronormativity being perpetuating the expectation for the norm to be cishet, allosexual, and able bodied. With LGBTQ+ identities being labeled disabilities throughout history, the connection to sexuality and disability is impossible to deny. I really feel as though the connection between the two could further the destigmatisation of these communities. 

What also really stood out was the discussion of sterilization and the medical attempts to “fix” disabled people, or to prevent them from having children. This is a very horrifying aspect of this discussion, that shows the painful aspects of what dehumanization and othering made people think it was okay to do this to disabled people and reading about it really angered me. 

The authors terminology was also really fascinating, especially with how efficiently McRuer was able to convey such complex concepts. “Abnormal sexuality” to note was a very effective term that is fluid enough to cover both the stigma of excessive sexuality and of reduced sexuality. It was also really eye opening for McRuer to use film and literature from these times that reflect the historical oppression of sexuality in the disabled community. Using examples from William Faulkner’s The Sound and the Fury (1929) to show an example of a disabled man who is castrated for his disability, as well as using examples of Shakespeare and the movement to show disabled people in a nonsexual light. This also helps really put into perspective the vast timeline of these issues, and how this has been going on for centuries.