Relationships Throughout & In Disability Final Project

https://show.zohopublic.com/publish/kn44jb40693a580b64adaac601cdc4a93af8d

Author statement:

I would like to begin with a small statement about my background and how that not only influenced this whole project but my approach to it as well. I’m currently a psychology major with an interest in pursuing a career in mental health like a therapist. With that, viewers are going to notice vocabulary and emphases that will be obviously geared towards psychology or inspired by it. The reasoning behind this, besides my own bias here, is I truly do believe that people can learn a lot about others if they have the psycho-social skills to do so and that begins with simply having empathy as well as an open mind. I titled it in the project itself, but education really can be empathy. I humbly admit and recognize that even the field of psychology falls short when it comes to disability in many ways. One of the ways I noticed quickly can be language used. I am guilty in taking part in the ignorance at times, so this project was not only a way to educate myself better along the way but hold myself accountable in order to reject ableism instead of continuously upholding it.

Why I chose this focus comes down to a few reasons. I enjoy making connections with people so relationships in general are important to me so naturally I like learning about them, mainly how to strengthen them. Throughout my time taking a course on Disability Studies, one of the things that caught my attention the most would have to be the idea that rhetoric is made up of relationship and therefor relies on them. I believe we create rhetoric and work with it in unique ways. I learned many different forms of communication during this class and project that helped people grow in relationships. People can be very flexible and always open. If anyone is to take anything away from my piece, I hope that it is to embrace your own humility and care for others around you not just physically but emotionally (yes, even if you happen to not have a direct relationship with them). The cliche is true, you do not know someone’s story or what they can do and to limit someone off of brash societal expectations upholds the very systems that destroys their social mobility by restricting access.

With kindness and gratitude, please enjoy this explorative piece.

Looking Back at English 401

This class overall was a new experience for me in a very beneficial way. It felt like an appreciation for re-learning what space and language means in a multitude of different forms that also convey “new” ways (new to me) of representation for each. Throughout my journey I learned to reinforce certain ideas I previously had gaining more confidence in my critical-empathetic thinking skills, un-learn language that could be harmful and preventable through more thoughtful engagement, and challenge others around me to do the same with education. Something that I struggled with at times is integrating and separating my own background and schemas into these subjects. I was never a perfect ally to the disabled community but that was due to my own in-experience with the subject as a whole. I quickly found out there is a lot of overlap with certain language and thought processes when it comes to psychology and disability studies. However, I am not the first to point out that aspects of psychology have disregarded or otherwise disrespected the community in many ways.  

Language would be a huge addition to the intersect as well as differences with psychology and disability studies. Traditionally, I am not completely familiar with the neurobiology side of psychology nor is it my main interest. However, I do know some of the neurobiology that can follow different conditions of the mind. I even teach a peer support group on mental health and for one day we learn a small bit about biology. When we discuss how harmful the medical-biology focus can be with disability I immediately followed along. I’ve witnessed the inconsiderate take that doctors can have at times and the ill use of specific words/phrases when talking to a patient. What stuck out to me is it can be slightly different with mental health. As an aspiring therapist, I want my future patients to know that it can be empowering to learn about why they are reacting to things the way they are and how that works but strictly only if they desire to know. Education is empathy and it starts with learning about oneself. That is bound to look different for everyone so while some may want to learn, others will not and that is okay.  

I believe that key themes and specific ideas stuck with me throughout this quarter. The biggest one would have to be kairotic spaces. It was nice to immediately note that Andrew uses all of the teaching techniques that was included in the piece about how to make the classroom a kairotic space. I think it can be useful later in my life and therapy. Additionally, I think it would be interesting to read about how kairos/kairotic space works within different relationship dynamics too. Another big theme I enjoyed was learning about the intertwine between rhetorical analysis and disability studies. After learning about rhetoric last quarter, I was invested and seeing it applied to something social justice and community based kept me engaged.  

We continuously tried to define disability studies. At the beginning of the quarter, I wrote with not so much confidence that disability studies, “Interacts with the rhetorical through occupying spaces implicitly and explicitly. Like rhetoric, disability studies will always be changing and moving with/throughout the human body. It pays no mind to the physical form of the body or abilities because that is never a guaranteed constant.” Now, I would say with confidence that disability studies aims to challenge its audiences through an embodied rhetoric that cannot truly be captured or accurately placed into a definition. It changes and moves with rhetoric and adapts its abilities with engaged participants like kairotic space.  

Major Project Feelings & Frustrations

Reminder: 

My project is centered around the idea of relationships in/across disability. To explore this, to educate myself and others I am using mainly anecdotal pieces for perspective. Through this journey I hope to re-direct people’s minds when they think of disability or how they treat a loved one.I’m going to have main sections that will have subsections of information I find relevant for each, some might be longer than others for personal interest sake. The main sections will be Family Relationships, Romantic, Friendships, and a section on Sex/Sexuality (relationship with self). I would like to include mental and physical disabilities since I’m interested in both. Subsections might include a chosen theoretical approach to look at the subject from, important concepts not talked about enough, and why it matters to know the information or what it means. I intend to do a slideshow presentation with different complimentary embedded media forms (I.e., pictures, videos, music).  

Progress: 

So far, I have some resources I’m considering using for information and stories to cite. Additionally, I might try to find scholarly articles with certain statistics but I don’t want this to be heavy research-based and like a story-telling approach more.  

Sexuality/Sex: 

Vice’s Sexual Healing: Inside the World of Medically Assisted Sex 

Robert McRuer’s Sex and Disability  

Alex Taylor’s blog piece titled Disability and Dating: ‘Why do people think I’m my boyfriends’s carer’ 

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

Romantic: 

Alex Taylor’s blog piece titled Disability and Dating: ‘Why do people think I’m my boyfriends’s carer’ 

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

*For both Family & Friendship I am trying to decide between a few YouTube videos/interviews to take from but haven’t made a final decision yet* 

Worries/Questions- 

One main concern is how I go about sharing the information and what I share. I want to be able to recognize my status of privilege here, and that I am not “studying” a group of people/ a community I am not a part of. With that in mind, I thought taking from certain approaches or a main one (DS and rhetorical lens as we’ve been learning about) would help reduce that impression and everything stays respectful and educational. I want this to feel insightful and interesting enough to answer certain questions while posing others. I’m having a hard time with resources that I think are solid but I also find it interesting the results I’m getting as they are telling themselves. I’m debating reflecting on it in the presentation, how ignorant some related searches were or how hurtful titles were. I believe the media will be the easiest part to incorporate and the most fun for this though which is exciting.  

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 

Why Crip Camp is Important

The film Crip Camp is a storytelling showpiece about the roots of disability rights and disability rights activists. While the documentary centers around the story of how the ADA came to be and activism in general, it offers an important theme of community and accessibility embedded in. We begin the film with a nostalgic 70s scene of campers at Camp Jened. Camp Jened is an all-inclusive camp for young teens with a disability. At the camp, the audience gets to see disability in a different light than usual as campers build friendships that stand the test of time as we see later on. As a student who never received education about disabilities or disability rights, this film struck a chord with me. I wish my high school had this built into the curriculum in some way. I believe it could fit really well into a history class and teach students to think deeper into human rights and politics.  

After establishing a community in Camp Jened the film jumps to a different time in campers lives as they’ve grown up and find one another again. The story mainly includes three campers named Judith Heumann, Stephen Hoffman, and Larry Allison that retell their story and how they all became close friends from beginning of camp to later in life. Not only is history important in this film for the obvious reason of laws being passed, but there is first a history of relationships that allowed there to be protests pushing for legislation to be passed. At Camp Jened, it was clear the space the entire time was about helping one another out beyond just physically. To create an atmosphere as such is not a difficult feat, but it is difficult to keep it going outside those safe walls. Authors Susan Burch and Kim E. Nielsen emphasize a social-relational model of disability for historians to refer to in their chapter appropriately titled “History.” With this model disability can be seen as shaped by the environment the person is in (Burch, Nielsen, 96). That is to say that if a person with a disability is around a culture not only inclusive to others like themselves but also a culture that is open for them physically and socially then they will thrive. Unfortunately, America has not been successful with that goal and that is where protests began which ignited the ADA.  

Coming from a small town with small minds, I can see how this might not always execute well when shown to high schoolers. The issue I believe just lies in the belief systems and how strong they are (always have been) surrounding disability. I will promise you that there will always be at least one or two students that will be open minded and that can change a classroom environment entirely. This film is going to be necessary for those environments. Another issue with rhetoric surrounding disability is the fact that most stories told about folks who are disabled are told by able-bodied people. The film can offer aspects of teaching that should and need to be acknowledged when discussing history such as psychological issues, sociological impacts, culture, and intersectionality. As Burch and Nielsen said, “Disability rights movements in all of their manifestations share central themes in history: struggle, citizenship, labor, power, violence, health, representation, and community.” (Burch, Nielsen, 97). In high school I believe it’s important to realize the power that groups create. If teens had more exposure to civil rights knowledge and more specifically how they came to be (like this film) I think it can be easier to see how they themselves can create change in the world when it’s needed.  

Something big I personally took from this film is how the community helped shape every part of action that was taken. I could be wrong, but I feel like if one is almost thrust into the world of politics because it’s demanded it can be exhausting quickly. By that, I mean when your rights are at risk, you feel the need to act because no one else will. However, Judy Heumann our main leader of the protests, had community all the way back from camp helping her. In their adult life they still found one another taking care of each other mentally and physically to better the whole nation.  

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.  

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. 

In Their Own Voices: Disability Visibility Review

Disability Visibility is a multi-author book filled with numerous short narratives from the perspective of those living with a disability. Separated into four distinct categories, the stories may seem overlapping in tone or themes, but not in the sense that every experience is the same. If you are to take anything away from this wonderful novel, it should be the emotional ties that are in this book between authors (that do not know one another) and the ones that are created from author to reader. An important note, and one I tend to highlight, is the inclusion of different mental and physical bodyminds. When I refer to bodyminds, what I really mean is the non-separation that exists between the human body and mind. This novel celebrates every kind of different bodymind that we typically don’t see represented in regular media (tv, movies, literature, news etc.). And with the exposure of this book, the authors represent themselves in their own voice on their own terms.  

Some might wonder why such a piece of literature needs to exist, why does this matter so much? That’s a wonderful first question to have. Disability Visibility is for the humanization of those living with a different bodymind than the status quo through the artistic use of short, educational, passionate narratives. It does not serve to explain or justify everything to the reader. The authors may very well have had to feel that unnecessary burden in their life already, and that is just it. To take the time to formally step-by-step educate a reader throughout this book is to justify their existence, to strip away their right of just being. With the power of storytelling, you get moments of insight and truth like this; “Fortunately, love isn’t a collection of capacities, of practical contributions. My love isn’t diminished by my inability to carry my son up the stairs, just as it isn’t diminished by the fact that I didn’t carry him inside the uterus.” (Pg. 132). This excerpt is from one of the shortest chapters and it is written by Jessica Slice. Slice spends no time explaining any social stigmas associated with her disability, nor does she define any terms. Instead, the chapter is mainly dealing with her range of emotions and thoughts when discussing her identity through motherhood.  

The novel is not an academic piece. It is written in an extremely personal manner but still reads with an energy of empowerment, passion, and wit. Through the narratives one can see the marriage between relationships in the outside world to the growing one with oneself. Author s.e. Smith says it best in their chapter claiming, “Members of many marginalized groups have this shared experiential touchstone, this sense of unexpected and vivid belonging and an ardent desire to be able to pass this experience along.” (Pg. 272). Smith masterfully switches between a storytelling, descriptive perspective to a large-scale one critiquing social normalization and ableist opinions that object to what they name “crip spaces.” Each narrative provides some readers a relaxed feeling of “I’m being seen” while giving others a necessary call-in to see things in a new light with necessary self-reflection. The pieces are intimate. You feel like you’re having a conversation with the author and most of the time in my experience, the conversation does not end there. Whether you find yourself in an academic setting discussing the stories or just a group of friends, it’s almost promised the words on the pages will have you translating what it meant to you with someone else. The novel is a true love letter to identity and the human spirit that thrives off being unique in harmony with the bodymind you have. With that, I leave you with another quote by Dancer Alice Sheppard: 

“I have come a long way from the brokenness of disability expected by the nondisabled world to an imagined space where the binary of “broken” and “whole” seems to exist. I look forward to learning about the effects of this thinking and to discovering what is next.” (Pg. 167).  

RAB: Imposter Syndrome and Parenting with a Disability

Imposter Syndrome and Parenting with a Disability by Jessica Slice 

Summary: 

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

Quotes: 

“Fortunately, love isn’t a collection of capacities, of practical contributions. My love isn’t diminished by my inability to carry my son up the stairs, just as it isn’t diminished by the fact that I didn’t carry him in my uterus.” (Pg. 132) 

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

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

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

Sexcapades of the Sinless and More: A Sins Invalid Review

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

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

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

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

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