Relationships Across Disability

  1. In this exploration, I want to discover the different types of relationships that exist in the disability community and how they intertwine, what they mean, and how they are misunderstood/misrepresented. With that, it will touch on distinct subjects that can lead to common themes and easily interact with terms or concepts we’ve already tackled in class previously. What happens when we challenge standard conceptions of romance, sexuality, and friendship in disability circles and let individuals tell their stories? 
  1. Interactive slideshow presentation with music and other media (potentially short clips and images) as well as questions for the intended audience (which is anyone really, most likely those ignorant to disability culture) 
  • Use Loom or Canva, some program friendly with creative presentations and media being implemented 
  • For the media specifically I’ll most likely incorporate a different type every slide or every other slide. Citations will be provided on the slide or at the very end of the presentation.  
  • It will be broken into different sections: RomanticPlatonic/FriendshipsFamily, Sexual/Sexuality (casual relationships). I intend to cover personal narratives I find to provide info from folks lived experiences rather than just data type analysis. Each section will most likely be able to point to either one text we’ve read or a new piece that others can take from my presentation.  
  • There shouldn’t be a clear, concrete conclusion for this but rather main points and themes that educate the audience while showing my own learning process too. I want to provide interesting resources that someone can go to afterwards to learn more and interact with themselves.  
  1. Week 11/15: Add more citations and details to the skeleton of the outline. Solidify the order of what is going where and why. Make sentences that can be changed/altered later on if need be. Mainly gather the big ideas w/o media for now.  

Week 11/22: Make it less of an outline, have ideally half of slides completed and revised. Finalize and write down all citations in order. Start gathering all the media I will need and know where it is going. Ask Andrew any questions I have before/after class. Decide if there are issues so far and what they are.  

Week 11/29: Revise all my work so far. Invite Andrew to look at what I gathered so far, how I placed everything in terms of making sense but also aesthetic. Check if the media works. Think of questions that are broad enough to have anyone answer with the level of knowledge they might have and gain from my presentation. Think of what pieces from class connect to each section in a meaningful, innovative way.   

Week 12/1: Should be completed with everything. Show peers, friends, and Andrew once more for the final time before turn-in day.  

  1. How long should this be slides and minutes wise with my format? Is there any very specific focus I might want to look at that no student has done before? How much media is too much?  
  1. Citations: 

Sex and Disability by Robert McRuer  

Sexual Healing: Inside the World of Medically Assisted Sex by Vice 

https://www.easterseals.com/who-we-are/history/  Easterseals Blog 

The Philosopher’s Dilemma: Why Different Bodyminds Deserve The Right To Live

Summary: 

In the piece, “Unspeakable Conversations” author Harriet McBryde Johnson recounts her experience with meeting infamous philosopher and professor at Princeton University, Peter Singer. Johnson is a disabled rights activist a part of the organization Not Dead Yet and lives with a neuromuscular disease herself. Familiar with his ideologies relating to infanticide and mirroring beliefs in modern-day eugenics, Johnson was intrigued yet reluctant to meet Singer. Their first interaction is intriguing because Johnson sees some of her own peers chatting with Singer, the man that believes anyone with a disability should not be born/be able to live. They get introduced and suddenly start exchanging emails for a while until Johnson is invited to speak at his university to a group of students with a follow-up Q and A. Upon arrival Johnson notes the attentive audience nodding along to the illogical, quite frankly horrid arguments Singer presents to them. He is professional, respectful, and calm. When Johnson speaks, she adds more of a personal touch while keeping the same professionalism. Afterwards, the two end up going on a walk as they also say their goodbyes and it seems Johnson’s opinion of his character has changed a bit. The chapter closes with thoughts running through Johnson’s head about Singer, about how ignorant people can be when it comes to disability in general. She feels content with concluding that Singer is extremely misguided but truly believes he is doing something helpful. She cannot hate him or violently argue because the world is filled with Singer’s unfortunately, but she was able to make some important dialogue with him that could alter others’ minds.  

Quotes: 

“But I have trouble with basing life-and-death decisions on market considerations when the market is structured by prejudice” (Pg. 10) 

“Within the strange limits of this strange assignment, it seems Singer is doing all he can to make me comfortable” (Pg. 18) 

“If I define Singer’s kind of disability prejudice as an ultimate evil, and him as a monster, then I must so define all who believe disabled lives are inherently worse off or that a life without a certain kind of consciousness lacks value.” (Pg. 26) 

Reflection: 

This reading wasn’t one of my favorites, but I think the writing got away from me towards the end. The theme that stuck out to me the most and seemed one of the most important was the power of rhetoric here. Since Singer had a professional, calm tone about him he would/will always have an attentive audience. Not to mention his status as a professor and famous philosopher. Singer has the privilege of painting his atrocious beliefs as something admirable because not only does he believe he is coming up with a real solution, but his status and demeanor demand interest and respect. If Johnson or anyone with Not Dead Yet were to speak out against Singer in a “aggressive” way that would be completely rational, an audience would see it as irrational depleting the other sides view immediately. Johnson knew for that reason she must remain calm but still added her personal touches in and also was professional. As we are all aware, many people similar to Singer exist in our world and they exist through their usage of rhetoric.  

The Debate of Humanity

Unspeakable Conversations by Harriet McBryde Johnson

This personal essay is about an attorney, Harriet Johnson, and a professor, Peter Singer. Singer believes in the killing of children before they are born or at birth if they are determined to have a disability or medical issue that will lower their quality of life. He also believes in assisted suicide if a person becomes so cognitively impaired that they can’t be considered a person anymore. Harriet, as a member of the disabled community, actively works against this ideal. In this essay, Singer invites Harriet to speak at Princeton and she shares her experience as a disabled person traveling and debating publicly with Singer on whether or not his ideas are morally right or should be legalized.

Something I want to point out is this question that Harriet seems to get a lot, “If I had to live like you, I think I would kill myself” (7). I was astounded to read this, how do people think it is okay to say this to someone? At the same time, Harriet has lived this way all her life, she doesn’t know anything else. Just because a life is different than your own doesn’t mean you can’t enjoy it, and Harriet makes that clear. That these stereotypes are just ran with even if they aren’t true, no one cares to dismantle them.

Another quote that stuck with me was at the very end, “I am still seeking acceptance of my humanity.” (27). At first, I thought this was a very dramatic statement. When I consider it further, it really isn’t. Harriet had to argue her right to simply be alive and breathe the same air as everyone else. She had to attempt to convince an audience that she and others with similar conditions deserve to be alive, that they aren’t mistakes. No one should have to defend their humanity like that, it’s absolutely ridiculous. It just continues to horrify me every time I go back and read or think about this sentence.

Exploring Different Bodyminds in Different Contexts

Navigating Disability Studies So Far: 

The field of disability studies is one that embraces intersectionality. Given the vast reach the field has and its roots in theory-based work, I cannot promise a precise definition, but I believe that it does not require one. One small example being the tie between disability studies and queer studies. Author Tim Dean summarizes it best in the claim that “What the field of queer studies shares most fundamentally with disability studies is a critique of the effects of normalization on embodiment, desire, and access” (Dean 144). It seems to hold core concepts and values that are apparent to anyone, that is what I would like to focus on. Disability studies is first and foremost representative of all communities, of all identities. This idea brings us to what is known as intersectionality. Since disability studies typically recognize the disability community as a rich culture itself, it is sure to include and explore identities within whether it be race, sexuality, gender and more. That is to say that the discipline highlights different bodyminds from different backgrounds. Secondly, I find representation being another key component tied into intersectionality. What I enjoy most about the study in my early introduction to it is the inclusion of mental health as well. While some may want to argue that a mental health survivor is/isn’t disabled, the discipline and those in it are not concerned with that. Terms and definitions can be extremely helpful when they are not being used to identify others in the upkeep of normalization and seclusion. The discipline represents a space for empowerment and encouragement through the critiques described by Dean. This unique study lends itself well to challenging the status quo and engaging audiences regardless of their knowledge on the subject.  

What Is Still to be Explored: 

There are still numerous unanswered questions I have about this subject, which is expected considering my novice status. I think where my interests lie is learning in more detail how ableism functions, how it’s upheld both implicitly and explicitly. While it has been mentioned and described, I think it just left me wanting to learn more. In addition to that, I want to know what solutions are being tried out or exist in response to ableism and the harm it creates. I think a history type lesson might help here. I would love to be taught about the past, present, and future of disability studies given I still don’t exactly understand how it came about. For anyone else learning about it, I think that approach answers why it is important that disability studies exists in the first place.  

Disability in Relationships 

Relationships in this context includes romantic, sexual, friendships, and family. Reading the novel Disability Visibility gave some insight on relationships in the disability community but it’s worth acknowledging that the community can appear family-like as well. S.e. Smith in their chapter titled “The Beauty of Spaces Created for and by Disabled People” reminds us that “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.” (Smith 272). Community and all the smaller social circles that make up a community or culture can be an entire topic itself. However, through every piece I got to read I couldn’t help but feel that there is important relationships established or made here to begin with. Smith is right, being a part of the LGBTQ+ community this feeling is an important one. What one example like this tells me is there are quite literal friendships formed in communities as well as more casual ones built on unspoken, mutual understanding. I don’t believe it is an understanding of “We have the same experiences physically” but more so a powerful moment where someone is seeing another’s humanity and granting them emotional safety possibly for the first time.  

 Family can have different associations for everyone. For example, the idea of chosen family over biological is not foreign to me and one that saved me mentally in the long run. What I liked about my learning journey for disability studies so far, is the possibility of this ringing true for some disabled community members as well. Family experiences are going to range for anyone but two stories in particular stuck with me when it came to family. In “When You Are Waiting to Be Healed” June Eric-Udorie discusses how her disability was viewed by her family as they came from a religious background. June says “At home, conversations about my nystagmus were sparse, except when discussed as a thing God would “deliver me” from.” (Udorie 55). What I gathered from this piece was that June might have felt further pressure from family to conform to a new body that was not possible. While I want to make clear these are others’ experiences and not my own, I recognize that from the story there comes greater pain when normalization is encouraged by loved ones. There’s an interesting push and pull. I believe the family did love their daughter but did not show it in the correct way. June already recalls accounts of being confused by messages of religion, I can’t imagine how hard it was when your support system enables part of that even accidentally. From how she chose to end her story, I think one of the strongest relationships she had was with God and realizing she did not need any saving or “delivering” from anything. In contrast, in the short narrative “Imposter Syndrome and Parenting with a Disability” by Jessica Slice the topic relies on how strong her relationship is with her son and understanding motherhood through a lens that is never discussed. When closing on what makes her a good mom and create such a healthy bond with her son, Slice says “I like to imagine that soon he will find comfort in the fact that I’m so often around, steady and patient, ready to listen.” (Slice 132). My favorite part of Slice’s story is the emphasis on her emotional bonding skills with her son. I think many people in the world can be there physically for their kid, I get that closeness is important. Where many parents fall short is losing the emotional tie because they do not actively/reflectively listen. When that kid grows up and becomes an adult it might be even harder to discuss real issues or sensitive thoughts.  

Rhetoric Fueling Disability Studies 

This topic is a challenging one and one I still would like to do more work with. Most people have a certain image or short description ready in their head when they see the word rhetoric. Initially, I did too, and I assumed I was mostly right. While rhetoric may include the traditional persuasive aspects we come to know in essays and political debates, there is so much more to it. A better question then is how does it work within and for disability studies?   

Rhetoric reaches across verbal and written communication as everything can be rhetorical. A way I tend to view it is rhetoric as energies. Everything has rhetorical energy. Rhetorical energy can come from a person or an object in which people interact with. Not only objects, but our environments in general. I believe there is usually a mutual transfer of this energy from rhetor to audience, rhetor to environment or rhetor to object too. Acknowledging that rhetoric exists inside and outside the world of verbal and written forms opens a lot of doors for those who are disabled. When majority of society leans toward one or two forms of communication in specific outlines for each, people are bound to fail. The normalization mentioned previously is apparent here as it creates a binary of passing and failing. In their book Fading Scars: My Queer Disability History O’Toole makes a point in line with this concept of strict rhetoric stating “Not only are disabled students presumed incompetent, but also students who speak English as a second language” (O’Toole 22). I think the way that schools typically have this issue simultaneously displays how people in general ignore the power of rhetoric in our environments. The same way a politician can give a speech on why disability rights and inclusion matter while sharing rhetorical energy with the audience is the same way a set of stairs can with its own “audience.” If a university is all uphill with only stairs and gates that sends a message. It is not intended for people with a disability because the people who designed it gave them no thought. Whether it is implicit or explicit in its expression, there will always be a rhetorical energy found in the things we create or interact with. O’Toole highlights this when they discuss the exclusion of the disabled community in media and history. They write “We are ignored, overlooked, mislabeled, discounted, omitted, and sometimes intentionally not discussed.” (O’Toole 39). The act of saying nothing can hold the most rhetorical power since it says a lot. Not saying anything can cause a world of violence on a small scale like individual cases to a larger scale like dangerous policies being enacted (or taken away for that matter).  

Bodyminds in a Medical-Focused World 

One of my favorite topics in disability studies so far has to be the inclusion of realizing medical-based ideologies often conflict with the people in which the medical community treats. I’ve personally been more invested in psychological healing like therapy more so than learning about biology treatments and the medical field. It shouldn’t come as a surprise that doctors sometimes fail to be there emotionally for a patient or use proper language of inclusion. Of course, they are trained on ethical and moral issues, but that does not mean they make no mistakes. A medical model of disability is aimed at resolution of the body to reach, once again, a standard of normalization. I bring back s.e. Smith into the conversation as they clearly explain the context we choose to frame those with a disability and the spaces we give them to exist. Smith writes “For disabled people, those spaces are often hospitals, group therapy sessions, and other clinical settings.” (Smith 272). How the majority frames any minority actively has long term effects on how they live and usually the quality of life they live. Specific language used in disability communities is not acknowledged by the medical community whatsoever. We rarely see or talk about disability as a cultural experience and the introduction to disability studies is the first time I have viewed it as such. O’Toole claims “That information is rarely known by nondisabled medical professionals, who are almost always disconnected from the broader disability communities.” (O’Toole 17). The burden of change rests not solely on the medical community but on all of us. When someone is exposed to disability circles, real social settings for their community their quality of life is changed because for once they do not have to justify their existence. I think it is up to everyone outside of disability circles and communities to recognize that different bodyminds are not left for doctors to discuss. The conversation does not start and end in medical settings.  

Work Cited: 

Adams, R., Serlin, D., & Serlin, D. (2015). Keywords for Disability Studies (Keywords). Chapter author: Tim Dean. “Queer”. New York: NYU Press. 

Disability Visibility: First-Person Stories From The Twenty-First Century, edited by Alice Wong, Vintage, June30th, 2020.  

O’Toole, Corbett Joan.  “Celebrating Crip Bodyminds”, Fading Scars: My Queer Disability History, 1st ed., Autonomous Press, June 9th, 2015. 

“Normal” is Bull Shit

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.  

RAB: Disability and Queer

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

Summary: 

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

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

Quotes: 

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

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

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

Reflection: 

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

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