Month: October 2021

Back to the root: Identity

Tuesday5 Comments

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

Interplay: Or My Evolving Understandings of Dependency, Access, and Accommodation in the Context of ENG 401 and Disability Studies.

Clover3 Comments

A) My current understanding of disability studies: The completion of this Composite Essay has brought me to consider what I know at this time about disability studies, based on my three weeks as a student in ENG 401. This far into our course, I understand disability studies to be the academic interpretation of disability, especially in play with society, beginning with the principle that disability exists as a social construct and not a physical condition. A disability may stem from various physical or mental impairments, but those do not inherently make someone disabled. So, disability studies would strive as a cause to re-educate the public through disability awareness, and establish more equitable systems in society for those who are disabled.  Personally, I subscribe to the social model of disability, which proposes that disability arises from social barriers as opposed to physical impairments. I resonated with the model after reading the chapter “Reassigning Meaning” by Simi Linton from Claiming Disability, one of our Week One assigned texts. Something I find particularly relevant to my understanding of disability studies from this chapter is the way Linton regards disability terminologies, which she claims “have been used to arrange people in ways that are socially and economically convenient to the society” (Linton 9-10), and this precedes even their definitions. In my experience, becoming aware that American society is not inherently designed to accommodate disability, at first, carries a charge of blame to it, but it’s hard to pinpoint exactly where or to whom. While perhaps our lawmakers have work yet to do, I think Linton’s observations illustrate an important point; that disabled people are a minority, and that societies unfortunately trend towards expediency to accommodate the largest number of people with the least resources. So, the minority status of disability is central. I think this helps to get at the definition of disability studies, too, because much of the focus of disability studies is in identifying gaps in accessibility, which helps institutions to avoid oppressing the disabled and lowering their quality of life. On page 12, Linton writes that “a premise of most of the literature in disability studies is that disability is best understood as a marker of identity”, and I like to extend this to disability studies as well, which approaches disability as a highly integrated facet of the self as part of the whole bodymind. So, disability studies, in short, is a sociocultural understanding of disability as a construct, with an emphasis on equity and inclusion and in resistance to the classic, medicalized understanding of disability. Or that’s what I know of the topic so far in this course.

B) What I would like to see more of as the quarter continues: Our class had a discussion last week on what topics we would like to pivot towards as the quarter drags on, and I maintain interest in disability and masking, workplace discrimination, and crip theory. As well, I would appreciate further instruction in rhetoric, because I felt my writing skills get stronger almost immediately after reading the Grant-Davie text. Having the language to articulate someone else’s argument in abstraction from the text has been a massive insight for me. I know that the rhetoric is secondary to the disability studies focus of the course, but it has been what’s stuck with me the most so far. Of course, the three topics below are also things I would like to revisit further into the quarter.

C) Three concepts with significance to me thus far: For the third part of this composite piece, I’ve selected three topics that have been on my mind, and in my journal, recurrently this quarter. I’m going to discuss dependency, access, and accommodation, because I think these topics are similar in a lot of ways, but distinct, and they identify some of the social ‘rubs’ of disability. The topics are highly interconnected in the adult sphere of disabled life: for example, graditations of dependence requiring improved accessibility and accommodation to manage, improving access helping to manage dependency, and accommodations which improve access in society. Social opinion is heavily enforced by these topics, which are often subject to public scrutiny, as there’s usually a democratic process to expanding access/accommodation using public funds. I am interested in the way each topic feeds into the next, and with my interest in theory, have been priority topics for me thus far in the course.

Concept one: Dependency

I’ll start with dependency, which I view as one part of disability that society is not capable of ignoring, and has an obligation not to dismiss. Unfortunately, the responsibilities of providing economic support, additional needed care or technology to those who would require them has poisoned society’s understanding of dependence as anything other than a social problem. Eva Feder Kettay, who authored the chapter “Dependency” from Keywords for Disability Studies, wrote that many scholars of disability acknowledge, contrary to this, that “what undermines the ability of disabled people to flourish is the view that being self-sufficient, self-reliant, and self determining is the norm, and the only desirable state of persons in a liberal society” (Kettay 54). Dependency isn’t a lack of independence; rather a state of recurrent need for assistance in some way. Viewing those who are dependent as a sunk cost invites the incorrect assertions that teaching independence “ultimately saves public expenditures because the provisions sought are less costly” (Kettay 57). Dependency is a relationship which can be managed, and managing dependency allows those needing care to “select and optimize the opportunities that such acknowledgment makes possible”, growing synergistically with those involved in their care to where both parties feel respected and understood (Kettay 58). I wanted to address dependency first because dependency seems to be the line at which society takes issue with disability. As well, society’s understandings of both access and accommodation are both intimately informed by understandings of dependency, and what dependency looks like, and what it allegedly costs to the public.

Concept two: Access

Second to dependency, I believe the concept of access is a helpful foil, and is a topic that has dominated our class discussions this quarter, so is worthy of notice. Chapter three of Keywords for Disability Studies, by Bess Williamson, is all about access. Williamson defines it access in a few ways: as “ the ability to enter into, move about within, and operate the facilities of a site, and is associated with architectural features and technologies, including wheelchair ramps, widened toilet stalls, lever-shaped door-handles, Braille lettering, and closed-caption video”, but also acknowledges the figurative aspect of access, the “set of meanings linked to a more inclusive society with greater opportunities for social and political participation” (Williamson 14). The type of access I had considered over the quarter so far would be access in society; to jobs, resources, experiences, states; so, the first kind Williamson mentions. It’s this kind of access that the disabled are not privy to in whatever regard which sets the field of ableist privilege in society. I agree with Williamson that besides representing a type of social liberty, access and accessibility convey “arguments about rights and opportunities” (Williamson 15). Access is in this way a positive skew on the elimination of opportunities, but must not mandate “overcoming the reality of barriers” (Williamson 17). Access is not achievability, but availability. It’s through examining access that accommodation can be taken, anyhow.

Concept three: Accommodation

As mentioned twice above, I view accommodation is the praxis of access. I would have said walking into this class that accommodation was a goal of disability advocates outright, but today I would say that it is part of a customization process that some disabled people elect for and pursue to achieve better social inclusion. I was surprised that Keywords for Disability Studies’ chapter on accomodation, by Elizabeth F. Emens, only really acknowledges accomodation in institutional terms. Although the term first “gained prominence as a keyword in disability politics and theory through legal discourse” (Emens 18), it has since gone on to describe the set of manipulable parameters an institution can customize to better suit the needs of an employee, student, customer, client, etc. therein. As something that exists between institution and individual, accommodation is an intensely litigated topic, and Emens believes that to some scholars it will “always be too limited a model”,  because it’s “grounded in antidiscrimination principles” from its origins in the courthouse (Emens 20). I think that accommodation is central to disability studies because it exists in the liminal space between exclusion and inclusion, so when accommodations are available there is an additional responsibility that they must be freely and readily given. Part of my own frustration with the institutions who helped to manage my disability when I was young were the inconsistencies in delivering accommodations. To our class, the topic of accommodation is treated almost as an option to rectify the exclusion of societies which are ableist by design, and has so been a third and final focus of mine this quarter.

Conclusions:

I chose to discuss dependency, access, and accommodation because of how connected they are to each other, and to public conceptions of disability in society, one concern of disability studies. As the quarter progresses, I do expect my understanding of these topics to change, and something I would be interested in is revising this essay at the end of the quarter and measuring my academic growth on these topics. I’m grateful for the chance to be in class every day, growing my understanding, and I hope my empathy, but I am by no means a definitive authority on any of these topics. 

Works cited:

Linton, Simi. (1998). Claiming Disability: Knowledge and Identity. “Reassigning Meaning” pp. 8-17. New York University Press.


Adams, R., Serlin, D., & Serlin, D. (2015). Keywords for Disability Studies (Keywords). Chapters by: Emens, Elizabeth F., Kettay, Eva F., Williamson, Bess. “Accomodation”. “Dependency”. “Access”. New York: NYU Press.

“Normal” is Bull Shit

unsureunderwaterobot3 Comments

What is Disability Studies? And what questions do I have?  

Disability studies is broad, specific, academic, anecdotal, and intersectional; it transcends time. It aims to answer, what is it like to be disabled now? How it was being disabled in the past? How can we improve the world for disabled people moving forward? It is a study of people, places, things, and ideas. Disability studies does not exist in a vacuum; it cannot be seen through a narrow lens, but rather views the world holistically, centering disabled stories and lives. This field is far reaching. Disability studies is a study of race, sexuality, orientation, class, disability, privilege, rhetoric, design, language, limits and beyond. It offers a wider perspective of thinking and progressively looks to embrace and empower intersectional thinking.  

Disability theory is not an algorithmic equation. It cannot be memorized and regurgitated. It is a way of thinking and it’s for everyone. It is story-telling, listening, and amplifying. The way I have thought about it, it’s like putting glasses on your brain. Disability studies sees the world differently than churches, medical labs, and politics; and it acts accordingly.  

An interesting dilemma I am struck by is that I am learning about disability studies in a very ableist place. Higher education perpetrates all the “ism”s, both tangibly and intangibly.  

Disability studies seems to pose more questions than answers.

How, then, can we continue to open the floor for disabled voices in the classroom? How can teaching styles, floorplans, even temperatures be deconstructed to create a space suitable for the masses – including but not limited to disabled folks? How can we question our motives to ensure we aren’t studying out of pity or saviorism? How can we have open-ears but continue to be critical? How can we ensure our actions are not bandaid solutions? How can we actionably move toward a better world for disabled folks that gets at the core of mistreatment? How can we approach disability studies with a wide-reaching theory, while recognizing that disability is not a monolith? 

These questions are posed not to accuse, but to query. I think in the spirit of disability studies, I am called to push forward the spaces I take up. 

Critical thinking, based on our positionality is a huge part of disability studies. It challenges our learned understanding of “normal”. These learned understandings often come from a place of ableism, hierarchy, and individualism, and they must be broken down and unlearned. Because “normal” is bull shit. Disability studies supplies language, action, and conceptual reframing for learners to deconstruct ideas of “normal”. If there is no “normal,” which several authors have claimed thus far, how can we recognize difference? Eliminating “normal” can be misconstrued and create monoliths of understanding, which I am still grappling with. O’Toole, author of Celebrating Crip Bodyminds writes on the complexities normal and how we can balance deconstruction with recognition: 

“Acknowledging that there is no ‘normal’ doesn’t mean that everyone 
experiences disability as a political and social identity. Acknowledging that there is no 
‘normal’ creates a society where difference can be recognized without being diffused or ignored. It does not take away the culture of disability, only adds an opportunity and awareness for us to be more integrated into society as a whole” (O’Toole pg. 12) 

O’Toole mentions integration, which sparks yet another question. Integration can, in cases, lump folks in a way that does not appropriately observe difference. How, then can we acknowledge/recognize without diffuse/ignore?  

The questions keep on coming.

Sex, Beauty, and Disability  

Sex, attraction, and physical beauty are heavy concepts that carry personal and structural weight. Sex and beauty are vulnerable for nondisabled folks who don’t experience marginalization, so bringing in disability is a whole new can of worms. Sex and beauty are often tied closely with white supremacy, consumerism, and unrealistic standards. The rhetoric of the world tells us that disability equals abnormality and abnormality equals ugly. These structures are inherently false, but rampant. Margaret Shildrick wrote on sex and disability in Keywords of Disability Studies. They write about why disabled folks are sexually fetishized or erased, “… 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). Shildrick emphasizes that the mistreatment of disabled people comes from projected insecurities. I would argue that those insecurities come from a greater structural standard. Woven throughout Disability Visibility are stories of beauty and sex within the disability community. Stories of lives shared between disabled lovers are portrayed in Sins Invalid as well, a documentary of a performance team in San Francisco. These two learning tools use creative story-telling to enlighten viewers of the multifaceted experiences of disabled people regarding beauty and sex.
 

Rhetoric of space and Crip Space   

As explained in Dolmage’s Disability Studies and Rhetoric, there are myths created about disability that stem from inaccurate rhetoric; rhetoric in the literary sense, rhetoric of space, rhetoric of politics, and rhetoric of economy and culture. The world has given us a language, a physical space, and a general understanding that is built on ableism.

The concept of “crip space” was introduced in Disability Visibility in the chapter The Beauty of Spaces Made for and by Disabled People. Crip spaces are environments that are constructed in a way that not only includes disabled bodyminds, but is centered around them. The concept of crip space is very rhetorical by nature. Spaces produce an ability or inability to exist for disabled people. If an office is on the top floor of a building that only has stair access, a wheelchair user cannot physically exist in that space. If a classroom is taught at the speed of a neurotypical person, that classroom has lost its value for someone who is mentally disabled. No one used their worlds to explicitly tell disabled folks they don’t belong in those spaces, but the spatial rhetoric produced a space in which disabled people cannot exist. s.e. smith argues, “this is precisely why they are needed: as long as claiming our own ground is treated as an act of hostility, we need our ground. We need the sense of community for disabled people created in crip space” (s.e. smith pg. 274).

Healing 

After skimming through my journal, I am struck with the reoccurring topic of healing. This came up several times at the beginning of the quarter. Medical, charitable, social, and cultural scopes of disability have different ideas of what healing looks like. I think the idea of “healing” requires some sort of sickness (something that must be cured). In understanding disability studies, the sickness (what must be cured) is ableism. When You’re Waiting to be Healed is a story that portrays this concept well. It is about a girl growing up in a religious family with Nystagmus. Her family prayed for her eyes to be healed from the “cursed abnormality”. She writes, “I was praying a lot, asking God to heal me so that I could have some sort of normality” (Eric-Udorie pg. 55). She was desperate for her eyes to be healed because the world around her told her that she was the problem. I would argue that disability studies sees our hierarchal culture as the problem.  

Composite Essay (What I’ve Learned So Far)

Djellibeybi6 Comments

What does “Disability Studies” mean?

“To me, disability is not a monolith, nor is it clear-cut binary of disabled and nondisabled. Disability is mutable and ever evolving.” Alice Wong, Disability Visibility, Pg. xxii

I tend to interpret Disability Studies in three parts. Firstly, that Disability analyzes the history of the Disabled. How they lived in the past. How the attitudes and culture around the disabled has changed over the centuries. Disability is not a new phenomenon, and it has evolved and changed over time. Popular attitudes toward the disabled have and do change – with every moment it seems. And even how the disabled view themselves have changed significantly. How we have treated them has changed. Trying to treat those with disabilities as humans and deserving of love and respect has never been easy, but it is a necessary part of understanding who we are as humans. We can analyze the rhetoric of the past, the record of the ancients, to inform ourselves today.

Secondly, Disability studies analyzes the current climate of disability as it stands now – whether it be in popular culture, in day to day interaction, in social programs such as hospitals and housing services, in religion, in government, and on and on it goes. Now there’s a thought! We are all concerned about equality and representation in media and politics, but how many disabled politicians do you see in government? Why shouldn’t we have people with disabilities in positions of power? Yet I can’t name one physically or mentally disabled person in office today – the only indicators of disability being that a certain representative is claimed to be “insane” or “off their rocker”, which I tend to take with scepticism. A disabled person is usually as capable as an able-bodied person, but it’s still rare to see them in power.

And finally, taking the past and present into consideration, we decide what to do for the future. How can we improve the lives of the disabled, and everyone in general? What actions can we take to stand with and support those with disabilities. What actions are actually helpful and which are harmful? These are things that kind of have to be learned through trial and error, as everyone is different, and what is offensive to one is benine to the other. So, learning what we can, we make our choices and decide how we are going to act, and this will determine the future of the disabled, and by extension, the future of us all.

Where should we go from here?

“I am not ashamed that I cannot fast, but I know many who are, even though they are excused, […]. 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.” Maysoon Zayid, “If you can’t fast, give” –Disability Visibility, Pg. 38.

Religion – I come from a Christian background, but I would be interested in learning about how other religions handle disability (e.g. the muslim religion as described by Maysoon Rashid, in her essay, “If You Can’t Fast, Give”.)

“I think that if we limit people with disabilities from participating in science, we’ll sever our links with history and with society. JI dream of a level scientific playing field, where people encourage respect and respect each other, where people exchange strategies and discover together.” Wanda Diaz-Merced “How a Blind Astronomer Found a Way to Hear the Stars” – Disability Visibility, Pg. 173, (also available as a Ted Talk)

Education accessibility – particularly in the physical sciences, (Chemistry, Physics, etc.)

“While retaining the term disability, despite its medical origins, a premise of most of the literature in disability is best understood as a marker of identity.” Simi Linton, Claiming Disability – “Reassigning Meaning”, Pg.12

History of vernacular – I’m a fond fan of the nineteenth century. Got to love Charles Dickens and Jane Austen.

What has stuck out to me so far?

The book, “Disability Visibility” was an interesting read. I haven’t read the whole thing, but I have a fairly wholistic view of the piece. It was intriguing to read about different stories. I watched the video, “How a Blind Astronomer Found a Way to Hear the Stars” while reading the transcription of it written in the book. I appreciated the video because there were some elements of it that could not be transcribed to page, but I understand what the book was going for with this, coming up with a unique presentation of disability and how those who are disabled can and do participate in scientific discovery. I found that to be extremely fascinating, the process of sonification -turning data points into sound bits to make it possible for the visually impaired and blind to analyze the data (and often catching things those who see the data miss). I wonder if it can work with IR graphs in the chemistry department. IR is a (relatively) cheap and (relatively) easy way to determine the functional groups (alcohols, amines, carboxylic acids, ketones, etc.) of a molecule, and I wonder what it would be like if it was sonified. It’s an interesting thought. Chemistry is one of those subjects where it helps to be able to see what your doing, but a major part of it is analysis of data. What things can the blind man see, if we give him the opportunity?

I also found Maysoon Zayed’s essay on being a devout muslim with disabilities to be really fascinating. It made me reflect on my past and the place those with disabilities participate in religious groups. I would love to examine religion more, and the place the disabled have in Christian and Pagan cultures.

I’ve found in my brief life that a great many of the disabled community are kind and generous people who take their faith seriously. I’m reminded of a woman I’ve known who went by the name “Rolly”. She was wheelchair bound, and tried to attend church as regularly as possible. She was a sweet old lady. She would thank me for singing at church in her slurred speech, and she would often talk about missing her mother, a woman who had long passed into eternity. I haven’t seen Rolly in a while, I believe she has passed in the last year – but I may be wrong on that point. She was a sweet woman – one you don’t easily forget. It was sad when she wasn’t able to attend church when covid happened. But it was also beautiful how my church came together to make her feel connected; connecting her to the virtual service, meeting with her at her place when they could, and even singing Christmas hymns outside her window, when they couldn’t be face to face. Those were hard days, and those were beautiful days. It’s sad when a church treats people like Rolly with disdain – she was an essential part of the ministry there, and it won’t be the same without her and people like her. I wish I can say with more certainty what happened to her, but I honestly can’t – I’m sorry.

I found the readings to be most interesting when it covers the history of certain terms, like crip, disabled, ableist, in the vernacular of the disability community and in disability studies. I have never used the word crip before this class, and it’s not a word I intend to use much outside of this context. It’s kind of like the “N-Word” for the black community, and it’s unspoken rule: “It’s okay if a black person uses the word – but if your not black it’s racist.”. Crip occupies a similar space, but with less intensity. I don’t personally adhere to the exclusivity rule of using these words, but I recognize it as part of our culture at the moment, and the collective has the power to ruin me if I use it in common parlance, so I’ll be respectful.

All in all, this class has been rather interesting and has brought up some intriguing subjects. I can’t say it’s my favorite class of the quarter, but it’s certainly engaging, and the professor has done a good job.

Resources

Alice Wong, et al., Disability Visibility, Vintage books (a division of Penguin Random House LLC), June 2020.

Simi Linton, Claiming Disability: Knowledge and Identity, NYU Press, 1998.

Sexuality, Race, and Community

turtle4 Comments

To me, Disability Studies is a term used to describe the study of disability in terms of social, political, medical, economic, and educational structures. Disability Studies focuses on analyzing and education oneself on what it is to be a part of the disability community and the discrimination, segregation, and marginalization that they receive. Alice Wong writes, “Disability is sociopolitical, cultural, and biological.” (xxii) in the introduction of Disability Visibility. Disability is so much more than that though, as she later writes, “Disability is pain, struggle, brilliance, abundance, and joy.” (xxii). I feel like my definition of Disability Studies has come to a more full understanding over the last few weeks and I hope it will continue to do so.

As we move forward with this class, I hope to address many things. I feel as if I have more questions every time I leave the classroom. When I really think about it, the main things I am interested in are international. How do we compare in our societal and political treatment of the disabled community with other countries? How might we do better on Western Washington University’s campus for our peers who identify as disabled? I would also like to talk about lack of resources for children, like the kids in Gaza who are made disabled as a result of war and do not have access to what they need. I am from Palestine and every day I see and speak about people who have become disabled as a result of war and their fight to survive, now on a different level, as Israel continues to deny them the medical attention and supplies they need to survive. In terms of that, I also wonder about international law. I do know that there is an international law of war that protects the disabled community from targeted violence. Are there other laws like this? How well is this law maintained, especially considering we cannot always physically see or observe another person’s disability?

The first topic that really connected with me was sexuality in terms of Disability Studies. I had not really thought about the sex life and/or sexuality and what that entails for people from the disability community. In society’s eyes, they are undesirable and unwanted, they are not sexual beings. Humans are sexual beings, we crave love and physical affection from those we think highly of, members of the disabled community or human first and therefore have the same urges and experiences that others do, whether society is willing to admit that or not. I really connected with the documentary Sins Invalid because of the message it had. People of all colors, sexuality, creative method, and disability were on a stage taking back what is rightfully theres. They took back their sexuality and tore down the misconceptions that society gives us. The way everyone put their feelings, thoughts, and souls into their art made it feel so vulnerable and so incredibly touching. I want to continue to push past misconceptions created by society, to educate others, and push the boundaries down so that we can have more open discussions about sexuality in our communities, to normalize disability in terms of sexuality and embrace it instead of the ideas that society has put in our heads.

The second topic that I connected with was race. I have spent a lot of this class making connections to my experience as a marginalized person due to my race. I have been able to see similar ways that I, as an Arab, have been discriminated against that is very similar to the discrimination that the disability community faces. Later, we did a reading from Keywords for Disability Studies where I read the chapter on race. I learned about the problems of connecting race and disability and why making these comparisons can be very detrimental for the disability community and their goals. The book says, “The act of correlating race and disability is often fraught with violent and oppressive overtones.” (145). I’ve learned a lot about why I shouldn’t make this comparisons and how detrimental it can be, that these overtones will be assumed about the disability community if we keep making these connections and that can hinder their goal. In the end, I think this society requires deeper understanding of the terms ‘race’ and ‘disability’ in order to be able to compare and contrast without risk of misconceptions. Without creating these definitions, how can we move past these overreaching comparisons that create negative assumptions and make it difficult to work with race and disability in context of each other. Sometimes, we need to start at the basics in order to be able to move forward.

The third topic I took particular interest in was community. As a marginalized person of color living in the United States, I’ve had my fair share of imposter syndrome. I did not feel like I belonged anywhere, no one around me had many shared experiences or understanding for my culture, faith, or race. Throughout this class so far, we have been exposed to this feeling of belonging. Through the documentary, Sins Invalid, and the book, Disability Visibility, we have been able to see the power community holds and how big of a difference it makes to surround yourself with people that can empathize and understand your struggles, pain, and joy. In Disability Visibility it says, “Members of many marginalized groups have this shared experience touchstone, this sense of unexpected and vivid belonging.” (272). I found my community at Western and I remember that overwhelming feeling of belonging, of finding my family. I have come to notice that we do not have many safe spaces for people with disabilities to create communities and find empathy, comfort, and belonging with each other. I want to learn more about how we can create and use these spaces to best help the people within our community. Everyone deserves this feeling of belonging, a community to fall back upon and as a school, as a country, and in this world we need to put more emphasis and effort on creating these safe places for communities to develop and thrive in order to be a happy and productive society.

Works Cited

Adams, Rachel, and Benjamin Reiss. Keywords for Disability Studies. NYU Press, 2015. 

Wong, Alice. Disability Visibility. Crown Books for Young Readers, 2020. 

A Study in Progress: Moving and Growing Beyond

DellFrog6 Comments

Disability Studies: Or How to Not Repeat the Past

When I think about the core of disability studies, I think about the proper approach to studying history. We are meant to learn from the past and present in order to move forward, gaining a better understanding of the beauty of people’s lives and the mistakes we have made as a society. As such, I have decided to define disability studies thusly. Disability studies is an examination of the past and the present ways of understanding disability in order to create a more equitable and empathetic future. It is also a way of recording the history of the lived experiences of people with disabilities as a means of catharsis and visibility. Despite this definition, it is important for me to understand that disability studies are in flux and unlike concrete studies of other academic kinds. As a fairly recent topic of academic focus, there is much that we can learn from the world around us and the past we have experienced. However, what remains one of the most important pieces of disability studies to me is that we center the voices of people with disabilities. Both disabled academics and people who share their everyday experience outside of academia. We have to develop a compendium of knowledge around disability and the disabled experience before we can truly pinpoint a stable definition of disability studies.

Our understanding of disability as a society is still pretty primitive, given that as a whole society has chosen to oppress and suppress the stories of people with disabilities for centuries. Until we can see people with disabilities, and really see them, we will never have an equitable society. Similarly, Alice Wong says in the Intro of Disability Visibility, “Collectively, through our stories, our connections, and our actions, disabled people will continue to confront and transform the status quo” (“Disability Visibility”, Wong, xxii). Wong says that through our collective communities with people with disabilities, we can confront the norm that society has created as a means of pushing past it and developing something new. 

 Despite Nothing: Visibility, Community, and Redefinition

When considering the topics of community and redefining language, we first have to see and understand the core of the topics by recognizing what we know and what we understand. This is the core concept of visibility: being seen, understood, and listened to. Growing up, I could probably count on one hand the portrayals of disability that I saw or read in media. To this day, answering the question of how much disabled media I consume remains a small number. Between the lack of representation in publishing and on-screen, to the lack of conversations that we have in the everyday about disability, it remains a bit of a touchy subject with a lot of people. Some people avoid discussing disability because they fear offending someone, or they don’t know enough about it to want to talk about it, or they avoid it because they dislike the concept entirely. But the fact remains that as a society, “if I don’t see it, it doesn’t exist”, and so people with disabilities get swept under the rug or placed on pedestal to be admired, but never understood. Society doesn’t have an understanding of the lineage of disability or the breadth of experience that disability provides across the world. But still, we move forward toward a change and an attempt to see how to better move forward. When discussing ancestry, Stacey Milburn says, “…the ancestors would be the first to say that a lot of our contemporary politics are practical ones in nature- wanting loved ones to live life well, to have needs met, to experience joy, to love, to do what needs to be done, to feel freedom” (“Disability Visibility”, Milbern, 270). Milburn has an understanding that our ancestors and our pasts work together in tangent with the present to make a better future, but we have to look at them and recognize them first. I will continue to center the experiences of people with disabilities in my studies as a means of recognizing their lives and learning from them that I might share the experiences that they have to give with others, to increase the visibility of the disabled community.

Once we have seen the past and the present, we can get a better sense of community and redefinition. Community has been at the center of so much of what I have already studied. It is a deep longing for connection with others, to find a common thread and find joy in the relationship with people who are similar. I think that the studies of community in general are fascinating, but it goes beyond my understanding in the disability context. People with disabilities have been systemically denied community in the past, only given it in early learning or medical contexts. This leads to an increased sense of loneliness and hopelessness that could be easily avoided if society acknowledged the disabled community. This creates a sort of tension because if we focus on the academic community of disability, we are losing out on the experience of so many people who are not in academia. Similarly, if we stick to the common medical community, we are continuing to limit people to their diagnoses instead of acknowledging their scope of identities. This tension is addressed in stories like that of s.e. smith, who talks about the beauty of disabled spaces. They say, “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” (“Disability Visibility”, smith, 272). It is this sort of narrative that needs better understanding. Why has society kept community away from people with disabilities and how can we go beyond that?

Finally, understanding disability studies means understanding the need for redefinition. “The elements of interest here are the linguistic conventions that structure the meanings assigned to disability and the patterns of response to disability that emanate from, or are attendant upon, those meanings” says Simi Linton in her book “Reassigning Meaning” (Linton, 8). This concept is central to disability studies because our current definitions of words that are integral to the study are closed off and dated. Keeping disabled terminology centered in its medical origins is a limitation on the socio-political understanding of disability as we know it today. Once we redefine and reclaim terminology for the benefit of those with disabilities, instead of the limitations, it will be difficult to grasp at the core of disability studies.

Moving On: Coping With the Unknown

Thinking about the future of my personal disability studies journey, I think I have a good understanding of the theory and language surrounding the studies. However, I think that I am missing a practical element. While it is useful to be able to identify tropes and dated patterns of thought, I want to know how to apply and share my understandings outside of the academic context. How can I serve the disabled community, as both an ally and a member? Where do my privileges and limitations of experience fit in with disability studies? And broader questions like how do we help society to move beyond the inspiration porn concept of disability? 

Similarly, I would like to dig deeper into the study of mental illness as disability. We have many definitions of disability at this point, some broad and some narrow, but where does mental illness fit in? For specificity, does the mental health reclamation movement going on right now help the disability movement? Or is it a completely different conversation entirely? 

And as the broadest question of all, what is the end goal of disability studies? Is it to understand and learn from the past, like my definition of the study? Or is it simply to create an environment where people can be seen? 

Works Cited:

“Disability Visibility: First-Person Stories From the Twenty-First Century” (2020). Ed. Wong, Alice. Chapters by: smith, s.e.., Wong, Alice., Milbern, Stacey. “The Beauty of Spaces Created for and by Disabled People”. “Introduction”. “On the Ancestral Plane”. Vintage Books.

Linton, Simi. (1998). Claiming Disability: Knowledge and Identity. “Reassigning Meaning” pp. 8-17. New York University Press.

“Disability Visibility: First-Person Stories From the Twenty-First Century” – Review

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In our modern age, and in ages long ago, our responses to those with disability have been quite varied. But invariably, we humans tend to have two main responses to the disabled: pity and disgust. Pity that the disabled person can’t care for themselves without assistance or for their supposed “sufferings”, or disgust for much the same reasons. The book, Disability Visibility is an exercise in having a positive outlook to people who have disabilities. These people are not people to be pitied or disgusted by – they are human beings with unique opinions, thoughts, and outlooks, distinct from themselves and from the broader world. As the editor, Alice Wong, rights in her introduction to the book, “I am living in a time where disabled people are more visible than ever before. And yet while representation is exciting and important, it is not enough. I want and expect more. We all should expect more. We all deserve more. There must be depth, range, nuance to disability representation in the media.”.

Depth, range and nuance are what is presented in this book, Disability Visibility. All the author’s have different disabilities that affect their lives in different ways. They have unique social contexts that are distinct from each other. One of the author’s is a Muslim-American woman, Maysoon Zayid, who is an actor and comedian with Cerebral Palsy; her essay was about being able to follow her religious practices as a disabled person who can’t participate in the act of fasting. There is Wanda Diaz-Merced, a woman who was studying to be an astronomer and physicist before she developed blindness, and due to her blindness she and her colleagues developed a new way for her to analyze visual data through sonification. On the other end of the spectrum, s.e. smith wrote a story about the experience of watching an artistic performance done by people who are disabled, and what it felt to be a part of something that accepts them.

Not all the stories are going to be pleasant, or easy to read. Many of the author’s will hold opinions that are unpopular, but those are necessary for a full picture of disability. Ariel Henley talks about how a boy teased her for looking ugly due to Crouzon syndrome. Or Jen Deerinwater, who talks about how she was mistreated as an indigenous American with disabilities. Her story has more social commentary than most of the stories contained in the book, and it’s pretty damning social commentary indeed. But the stories also offer hope to those who read by presenting us with these stories, and how to help this marginalized group of people. It can be unsettling, as s.e. smith writes in her essay on the beauty of spaces for the disabled, “to be invited into our space. To be on the other side of the access divide. To see disabled people spreading their wings. […] Those in positions of power, evidently fearing that people are talking about them behind closed doors, persistently insist on barging into such spaces.” (Pg. 274)

This is just a small taste of the stories presented in this book, and there are many more. The stories are short and not difficult to read. They aren’t complicated or academic. They are simply stories that tell of the lives of the disabled. It tells of their struggles, hopes, desires and fears. It informs the nondisabled people about what it is like to live with a physical or mental handicap, and what to do to understand and help people with disabilities live their best lives as humans in our society. For the disabled, this book tells them that they are not alone, that they are not less than human because they are disabled, and that it is okay to speak out and tell their stories to the world, and that even though they are disabled, they can do great things. Alice Wong said it best, “I want things to improve even while grappling with this impulse, with the tension between “subject” and “audience”. I want to center the wisdom of disabled people and welcome others in, rather than ask for permission or acknowledgement.” Disability Visibility is a good starting point toward this lofty goal.

Disability Visibility: Action of Humanness

unsureunderwaterobot2 Comments

“Contribution, innovation, relation, condition, completion, devotion, identification, regret, burden, belief, wrong, right, rebuild, beautiful, embodied”, all words used to describe Disability Visibility. Disability Visibility is a compilation of “first-person stories from the twenty-first century” written about disabled folks, by disabled folks. This mosaic of anecdotes was pieced together by Alice Wong. Each story differs greatly. Authors explain their individual experiences of being disabled in a world built without them in mind. Despite each story being personal to the author, the overarching theme of the book remains consistent. From narratives about navigating medication as a woman with bipolar disorder, to stories about the shame casted on a young, Black girl growing up in a religious household, Disability Visibility amplifies the voices of folks silenced in our world.  

Disability Visibility is written for a wide audience of folks both disabled and not. It acts as a learning outlet for nondisabled people to hear stories told by people living with disabilities first-hand. It gives disabled people an opportunity to tell their stories and exist in communion with one another. A concept explained in the story The Beauty of Spaces Created for and by Disabled People is crip space; “Crip space is unique, a place where disability is celebrated and embraced—something radical and taboo in many parts of the world and sometimes even for people in those spaces” (smith pg. 273). Disability Visibility is a crip space, of sorts. It is a space where disabled folks can express themselves without the ableist pressures of our society.  

Each story grapples with the idea of disability, for example, from Incontinence is a Public Health Issue—and we Need to Talk About It, “I didn’t feel disabled, as it were” (Ramsawakh pg. 175). Or from When You are Waiting to be Healed, “I was learning to navigate the world as a young Black woman, and I did not feel I had the right to claim a disability” (Eric-Udorie pg. 56). Both stories have unique plots, characters, settings, and emotions, but themes remain the same throughout. The entire book carries parallel agencies. The most prevalent is to share the non-fetishized, pity-free stories of disabled people.  

Alice Wong compiled these essays and short stories as individual accounts that created a sense of communion. Jamison Hill’s chapter, Love Means Never Having to Say… Anything, discusses their partnership with a woman named Shannon. Both Shannon and Jamison are disabled by the same illness (although it has manifested differently in their bodies). Jamison writes about how transcendent disabled love is and how having a disabled lover has been incredible. They write, “…but Shannon and I take care of each other in ways I never thought possible” (Hill pg. 265). This story portrays the larger concept of Disability Visibility. The disabled community can take care, despite the world not reciprocating. The story, and book as a whole shows the disabled community in action. The story avoids inspiration porn and pity; but rather, it resembles compassion, togetherness, and humanness.  

Shining a Light on Disability Visibility

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Disability Visibility, edited by activist Alice Wong, is a collection of short personal essays written by a diverse group of disabled writers about their experiences with disability. As stated in the book’s back-cover blurb, “One in five people in the United States lives with a disability. Some are visible, others less apparent-but all are underrepresented in media and popular culture.” This fact necessitates a book like this one, because if disability is one day able to be seen as the norm, rather than a negative deviation from it, then nearly seventy million people in the United States will have their lives improve with the subsequent focus on necessary accessibility that many of the writers in this book advocate and create for themselves and the members of their community.

Among other uses, this book can give people with disabilities a sense of unity, faith in themselves and others in their capabilities to create change in the world, inspiration to tell their own stories, as well as a guide for building the healthiest relationship with their disabilities possible. For those who are nondisabled, this book can give them more awareness about the lives of people with disabilities, and help them recognize poor media representation that attempts to dehumanize disabled people. Reading this book can also inspire them to look within their own discourses for area where accessibility is needed so the responsibility of advocating for and creating it isn’t entirely placed on those who need accessibility.

One story in the book focuses on how an astronomer who became visually impaired during the height of her career. “How a Blind Astronomer Found a Way to Hear the Stars” by astronomer Wanda Díaz-Merced follows how she innovated her entire field by creating a technique of analyzing supernovas through sound, when previously, astronomers were only able to analyze them through visual reconstructions from data. This kind of novel innovation opened up an entire scientific field to people with visual impairments, and was only possible because of Díaz-Merced and a few of her colleagues’ determination to create accessibility. She states that, “If people with disabilities are allowed into the scientific field, an explosion, a huge burst of knowledge will take place” (Díaz-Merced. 173).

Another story called, “Imposter Syndrome and Parenting with a Disability” by writer and activist Jessica Slice who has Ehlers-Danlos syndrome focuses on her self-worth in regards to motherhood. She expresses in the piece that she is often unable to provide for her son in a way that other mothers based their identity of motherhood on, mainly in regards to physical activity. However, Slice gives the perspective that although she may not be able to pick her son up or drive him places, she is able to give him the emotional attention and steady presence that the children of nondisabled parents often lack from their caregivers. She writes that, “Love isn’t a collection of capacities, of practical contribution” (Slice, 132).

One last story overview is about “If You Can’t Fast, Give” by Muslim actress and comedian Maysoon Zayid, who has cerebral palsy. She expresses how Ramadan, or month of fasting that takes place yearly in Islam is not a requirement for people with disabilities or illnesses to undertake. Despite this, she chose to participate for as long as her cerebral palsy allowed. When the time came that she couldn’t participate for serious risk of her health, she decided to instead follow the tenants of her religion by making donations to charity in place of Ramadan, instead of feeling ashamed that she could no longer participate in the way she wanted to. Zayid states, “Muslims fast so they can suffer a little. It is important not to die in the process. Instead, those who can’t should channel their devotion into charity. This will not only help you stay healthy but also will help someone who is genuinely suffering” (Zayid, 38).

What each of these stories have in common is the idea that although people with disabilities might not be able to participate in their discourses like their occupations, their families, and their religions in the same ways nondisabled people traditionally do, they still occupy an essential role in their communities and are able to create meaning in ways that greatly improve the world around them. In fact they often do so in ways that nondisabled people either cannot or choose not to. Disability Visibility highlights this idea very well, the only problem I found with the book was that I wanted to hear more than a few pages of the experiences of these disabled writers, and many others with disabilities not mentioned. After all every of the one in five people with disabilities in the United States experiences their disabilities differently, especially within the context of the other parts of their lives. Perhaps a sequel is in order.

In Their Own Voices: Disability Visibility Review

Limbo1 Comment

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).