Capableism Blog

The Fault in Our Stars is the story of teenage cancer patients Hazel Grace Lancaster and Augustus Waters. They are 17 and 18, respectively. The author, John Green, revealed in a YouTube video titled Fault in Our Stars-Ten Years Later,

"It occurs to me that I spent my first few books exploring what consequences and experiences someone has when mitigating one another. The Fault in Our Stars shows teenagers' outlooks on cancer diagnosis. The introduction of Augustus "Gus" shows his confidence that he is "on a rollercoaster that only goes up."

Photo by Somruthai Keawjan from Unsplash

At first, he appears to lose Hazel Grace's attention when he puts an unlit cigarette in his mouth. To Hazel Grace, it seems hypocritical. To ingest more toxins known to cause cancer. To Gus, the metaphor is the source of confidence.

Testing the idiom

"So close but no cigar." His confidence breaks down when he can't find his pack while suffering from the aggressive return of cancer, and he drives to the gas station and gets an infection. He calls Hazel, refusing 911. He will not be sick. He needs to be independent. He holds tight to this conviction at the moment of the gas station. 

But after that, Hazel explains: I want to say Augustus Waters didn't have his courage waiver till the end, but that's not true.

He spent his last days wheelchair-bound/sick.

Sad you don't know it's your last good day till it's over. The story starts with Hazel and Gus sharing a nihilistic view that love is just a shout into the void, and we are destined for oblivion. However, they find comfort in each other and being "Okay."

Sick Lit

Sick-Lit is a subgenre of Young Adult (YA) fiction. According to Allison Monaghan, “offer a narrative medicine scholar a prolonged and authentic view into what it’s like to be a teenager and to be dealing in some way with  illness.”

However, while authenticity can be achieved, Sick-Lit is controversial; for mental health is a complex topic, and the inspired sick literature can dilute and simplify the harsh reality of issues like The Perks of Being a Wallflower.

“Green writes Hazel as her medical issues first and a person second. The phrase “pain demands to be felt” (Green 57) recurs throughout the book and is treated as an eternal truth.

However, pain is more complex than that and cannot be reduced to a catchy general phrase. Instead, pain can be ignored, and those who are able to ignore their pain are just as valid in their chronic pain as those who are unable to.” (Thompson, 2021, p.5)

Within the notion that pain is just as valid in circumstances where a person is fighting as in those where a person is unable.

There are fears of mortality woven into Hazel and Augustus, but the overall characterization of accepting death as far as writing eulogies for the exercise and closure that the teenagers understand their parents and friends will need.

But before eulogies, there was withdrawal because Hazel saw herself as a grenade bound to hurt those she loves. 

“In case of any kind of stress, the human mind tends to react in two main ways. The first one refers to direct coping, which increases problem-solving efforts. The second includes putting the defense mechanisms into effect.” (BOUGHERARA & BELLAKHDAR, 2019, p.14-15) 

The Fault in Our Stars ultimately resists being reduced to a simple narrative about courage, illness, or inspirational suffering. 

While it does participate in Sick-Lit as the narrative starting point. It explores the depth of mortality’s connection to love. Hazel Grace and Augustus make everything okay between them. Hazel is also afraid of being a grenade to those whom she loves. And Gus takes control of his mortality by “putting the thing that does the killing right between your teeth and never giving it power. 

References

BOUGHERARA, M. E., & BELLAKHDAR, N. E. (2019). Defence Mechanism and Tragic Downfall in John Green's The Fault In Our Stars. PEOPLE’S DEMOCRATIC REPUBLIC OF ALGERIA MINISTRY OF HIGHER EDUCATION AND SCIENTIFIC RESEARCH UNIVERSITY OF MOHAMED BOUDIAF – M’SILA, 14-15. DEFENSE MECHANISM AND TRAGIC DOWNFALL IN JOHN GREEN’S THE FAULT IN OUR STARS

Green, J. (2012). Fault in Our Stars. Dutton Books. 

Monaghan, A. S. (2016). Evaluating Representations of Mental Health in Young Adult Fiction: The Case of Stephen Chbosky’s The Perks of Being a Wallflower. Enthymema, 0(16), 32-42. https://doi.org/10.13130/2037-2426/7400

There are many types of disabilities, mainly physical and invisible disabilities. There is a wide range of reactions and stereotypes for many specific disabilities. Access is what the rights movement is. Without a clear reason, Abraham Lincoln chartered Gallaudet University in 1864. It is the first university for deaf and hard-of-hearing people.  Access reduces barriers to career and employment options for post-graduates.

Photo by Library of Congress on Unsplash

Historians note that Lincoln’s exact reasons are undocumented, but his personal experiences and public positions support the idea that he believed in the potential of deaf people. (Cordano) 

“Hearing loss is highly prevalent and undertreated, including among children. By 18 years of age, nearly one out of every five children is affected by hearing loss.1

Given the high prevalence of hearing loss, the lack of relatable media through which children with and without hearing loss can better understand this condition is concerning.” (Denham, 2024, p.750)

ASL has become more recognizable in the mainstream. This is because of the impact of media, such as deaf/hard-of-hearing characters in Marvel, The Walking Dead, and Switch at Birth.  

The prevalence of disabilities in the media can lead to Googling to satisfy curiosity. An example comes from

“The 2016 film, Hush is a clear example of the modern continuation of this issue.

A simple search of the cast will reveal that, although the main character was Deaf and the film's plot revolved around her Deaf Identity, neither the main actress nor any of the cast or crew were. Clearly, the hearing world enjoys viewing content featuring ASL and Deaf Culture, yet most people are unaware of the negative trend they are participating in by absorbing this misrepresentative content.” (Hamilton & Egbert, 2024, p. 2) 

Back in 1988, at Gallaudet University, there was a protest to reject a hearing president when there were two Deaf candidates. The students protested and rioted. 

Photo by Nicholas Green on Unsplash

We wanted to scream out, but how do you scream out in our language? 

 It started “It was chaotic. Everybody was signing at the same time. We needed crowd control, so I decided to take over the stage.

I hear nothing; I am totally deaf. But I have rhythm, I know how to follow a beat. You can move and follow music because you can feel it. In high school, I was a cheerleader. Movement and rhythm are everything. I realized what we need is rhythm so we can stay on the same beat.” (Bridgetta Bourne-Firl, Deaf President Now).

  The news covering Gallaudet University said, “Their world may be quiet, but tonight their anger is loud and clear.”

References

Cordano, R. J. (2018, December 10). A charter and a champion: The meaning of Lincoln's legacy at Gallaudet. Gallaudet University. https://gallaudet.edu/president/a-charter-and-a-champion-the-meaning-of-lincolns-legacy-at-gallaudet

Denham, M. W., MPhil, & Chern, A. (2024). Giving children with deafness a cape: Amplifying diverse portrayals of hearing loss in media. Ear, Nose, Throat Journal, 13(3), 750-751. https://doi.org/10.1177/01455613221087941

de C Hamilton A. F. (2016). Gazing at me: the importance of social meaning in understanding direct-gaze cues. Philosophical transactions of the Royal Society of London. Series B, Biological sciences, 371(1686), 20150080. https://doi.org/10.1098/rstb.2015.0080

DiMarco, N., & Guggenheim, D. (Directors). (2025). Deaf President Now [Documentary]. Apple TV. 

Fawcett-Jones,, S., Putland, E., Calvert, Broome, S., Henshaw, H., Dening, T., Burgon, C., & Hefferman, E. (2026). Smashing through barriers”? A multimodal critical discourse analysis of media representations of hearing loss and D/deafness. Public Library of Science ONE, 1-16. https://doi.org/10.1371/journal.pone.0342462

Photo by Samantha Gades on Unsplash      

Historically, the Deaf Community began to see widespread representation during the silent film era. Making the media normalize ASL and other ways to communicate outside of vocalization. And giving equal opportunities to Deaf actors because silent films were not focused on sound. The silent film era saw filmmakers focus on visual storytelling.

"Advancements in technology, during the film boom, led to the so-called “Talkies.” While the Deaf had previously thrived in the film industry with their natural talent for exuberant facial expressions and telling body language, the Deaf Community was now excluded completely from film as sound was introduced.” (Hamilton & Egbert, 2024, p. 2) 

Introducing sound has created a comparison between audio and visuals. Bad audio is worse for consumers than bad video. John Buday explains,

“I’ve learned the ultimate sin you can commit is recording bad audio. The audio component of any video is the most important factor in maintaining immersion. Bad audio will inevitably prompt the viewer to see the video in a negative light, often viewing the product as amateur or unprofessional.” 

The 'ultimate sin' is a topic of forums and YouTube videos. Content creators are the authors of online discourse. As the media has shifted away from traditional film and television in favor of personal brands, this shift has created problems with performing authenticity and inviting parasocial relationships with viewers. 

In traditional media,

“shows individuals with HL and D/deaf people being engaged, often alongside others, in an activity (e.g., dancing, celebrating, cooking, acting) or in the act of communicating through signing, having an interpreter, or interacting with hearing individuals. Thus, whether engaging with viewers through a direct gaze or engaging with other people or in actions, individuals with HL are depicted as agentive and socially involved individuals.” (Fawcett-Jones, 2026, p. 7)

With a direct gaze, “There are also clear interactions between gaze and other social cues. Attractive faces paired with direct gaze engage brain systems linked to reward [44], but participants judged smiling faces with direct gaze or neutral faces with averted gaze as more attractive than smiling/averted or neutral/direct faces [45].” (Hamilton, 2016)

This concept applies to the media, even though it was studied from individuals interacting physically with others; the media reaches more people simultaneously. “A single exposure to a mediated stereotype can create a cognitive link between a social group and a stereotypical trait (Dixon, 2007; Gilliam, Iyengar, Simon, & Wright, 1996; Peffley, Shields,& Williams, 1996).

When triggered by media, this link may immediately influence cognitive, attitudinal, or behavioral decisions (Dixon 2002, p. 248).

In the pursuit of representation, NAD CEO Howard Rosenblum said, “Integrating American Sign Language into the performance of the National Anthem during the pregame not only raises awareness of ASL, but it also helps to ensure that this iconic event is inclusive for all Americans.” (Ford, 2014) 

“The National Anthem at the 2014 Super Bowl Amber Zion, a Deaf performer, gracefully showcased her rendition of the anthem; she was a “prisoner of the bubble” on screen (131).

Hearing people thought she was merely interpreting the lyrics to our national anthem, when in reality, she was presenting it in her own language as a visual poem.” 

The misreading of the situation is an example of language barriers, with ASL having a different syntax from English. And “the decision to trap her in a small section of the screen as if she were nothing but a glorified captioning system, stating this action.”    (Hamilton & Egbert, 2024, p. 2)

Being "glorified" can make someone a token or a mark of progress in inclusion, while erasing differences within that culture to fit the mold of a token identity. 

“And yet modernist notions of identity remain important, in which structural constraints limit the range of identity claims one can make, and the ability to have these legitimized by others remains important.

For these young people, both ‘race’ and being deaf may pose important structural barriers to be faced in acquiring sufficient cultural capital to have identity claims respected; conversely, they may be the predominant symbols of identification.” (Hamilton 2016)

References

Bunday, J. (2023, May 19). Bad audio ruins great video – My first lesson on recording video. LinkedIn. https://www.linkedin.com/pulse/bad-audio-ruins-great-video-my-first-lesson-recording-john-buday/

Dixon, T. L. (2002). Media stereotypes: content, effects, and theory. In M. B. Oliver, A. Raney, & J. Bryant (Eds.), Media Effects: Advances in theory and research (4th ed., pp. 243-251). Routledge.

Fawcett-Jones,, S., Putland, E., Calvert, Broome, S., Henshaw, H., Dening, T., Burgon, C., & Hefferman, E. (2026). Smashing through barriers”? A multimodal critical discourse analysis of media representations of hearing loss and D/deafness. Public Library of Science ONE, 1-16. https://doi.org/10.1371/journal.pone.0342462

Ford, S., & The National Association of the Deaf. (2014, January 27). Actress Amber Zion selected to bring the beauty of American Sign Language to Super Bowl Sunday. America's Charities. https://www.charities.org/news/actress-amber-zion-selected-bring-beauty-american-sign-language-super-bowl-sunday/

Accommodation refers to adjustments or modifications made to support individuals with specific needs, often after those needs become apparent. Universal design, on the other hand, is the proactive creation of environments and products that are accessible to all people from the outset. What is the difference between accommodation and universal design?

They are both contextually aware of people’s needs. One is proactive while the other is reactive. Proactive example, a non-step entrance to a building. 

Reactive is a temporary ramp to accommodate those who need it. I put 'need' in quotes because that building design can be used by everyone. And people like working smarter, not harder, in other contexts.

Historical protests of discrimination are not always at the forefront of those focusing on universal design. An example of an accommodation that has now been used universally is having subtitles on. 

Photo by Immo Wegmann on Unsplash

“The new status quo of 'subtitles on' among the young reflects both a value shift and cultural conditioning as a result of big tech’s ever-encroaching impact on our entertainment experience.” Subtitles have been normalised as a result of our technology-infused lifestyle, rather than being something we have actively sought out or freely adopted. (Brooks, Guardian)

The problem is that the world is frequently described as having a difference between the world and individual worlds. Finding that place where you belong is important, and it is often in college. Gallaudet University is a place for many who are deaf. In the documentary film Deaf President Now, it is said that Gallaudet University is a Mecca to which people from all walks of life come.

The university is designed to be universally accessible to the Deaf community. And being in a place where you can be authentic is important for anyone, regardless of identity. 

“To other people, I was instantly an innocent angel, but my parents were like, no.” -Jerry Covell

There are standards and sometimes pressure  to perform well in education to obtain a good job. Jerry Covell and Tim Ruas both have another Deaf person in their lives who has molded or told them this is how you act in a hearing world.  Jerry’s father said, 

“Lots of people went there because of him. The lab technicians were like a deaf person? It's embarrassing to have a deaf person working for us. So they put him in the basement. And that’s where he looked. He was never allowed to sit upstairs. Was he a brittle-deaf person whom people were used to back then? They just took it. I’m not.” 

And Tim with his grandfather:

“If we were signing in public, he didn’t like it. He would tell me to sign in an 18in box. Ok, let me try and slowly sign bigger. ‘It’s very important you fit in.’ That was like a death wish.” 

Zinser, who was appointed president of Gallaudet University, stated that Deaf people cannot function in a hearing world. This phrasing was rebutted by Zinsser, who noted that a helicopter was overhead and that rioting students were present, and that she was obviously speaking through an interpreter. 

The problems she describes would not be a problem if she knew ASL, because the noise is a manifestation of the communication barrier, and the lack of change, whether the crowd was quiet or not, would be for her sake.

“Hearing people consume media for hearing people and do not seek out Deaf films intentionally unless they have had experiences, in some way, with the Deaf Community.

Yet most Deaf films suffer from inaccessibility; popular streaming platforms such as Netflix and Hulu often fail to recognize them and make them accessible to the general hearing audience. For example, the movie SuperDeafy (2013) is hugely popular in the Deaf Community, yet the movie is incredibly hard to find.

Streaming platforms Amazon Video and Vudu have the title listed, if specifically searched for, but neither place actually provides access to the film.”(Hamilton & Egbert, 2024, p. 4) 

Back in the silent film era, Deaf actors. In this short period, the hopes that the Deaf could be represented in mainstream media seemed plausible for the first time in American history. However, this golden era of inclusivity was short-lived, as all technological advances are sure to be followed by another bigger, better invention with shorter intervals between innovations.”  (Hamilton & Egbert, 2024, p. 4)  

Photo by Marten Bjork on Unsplash

The rise in internet algorithms serving a curated “for you” page contributes to this problem. The lack of understanding of ASL’s cultural significance and independence from English is a criticism that must be acknowledged when discussing popular representation in programs like Switched at Birth.

Mainstream representation is an entry point for anyone to see people exist outside of themselves, and evolving media can make anything seem brand-new to all generations, revealing communities people hadn’t considered existed.

The disability rights movement has focused on establishing laws for people with disabilities. The Gallaudet University protest highlights how advocacy approaches differ, with the hearing world often determining what the Deaf Community can manage.

Navigating between culture and mainstream expectations creates additional conflict. To address these challenges, people “whose words fly from their hands” are needed.

And it is sometimes necessary for a different person  to be reserved and speak diplomatically to those in power, but passion is also essential to ensure your community is recognized for their rights.

References

Brooks, I. (2025, September 27). Most of Gen Z watch TV with the subtitles on – and I understand why. The Guardian. https://www.theguardian.com/commentisfree/2025/sep/27/gen-z-watch-tv-subtitles-i-understand-why

DiMarco, N., & Guggenheim, D. (Directors). (2025). Deaf President Now [Documentary]. Apple TV. 

History was made in 1990 when the Americans with Disabilities Act was passed by George H.W Bush. The 1960s through the 1990s were when the movement caught nondisabled people’s attention for resisting the narrative of people with disabilities being weak and incapable of independence.

Photo by Library of Congress on Unsplash

The disability movement was influenced by the Civil Rights movement, which was happening simultaneously. The success of these movements can be seen in historic discrimination cases of Brown v. Board of Education and the ADA.

Prior to the ADA section 504

No "otherwise qualified individual with a disability in the United States, as defined in section

705(20) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination

under any program or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service. "

Even with legal changes, the hegemonic norm does not keep pace. Netflix’s documentary Crip Camp focuses on the disability rights movement through the experiences of campers with disabilities and the leaders who emerged from them.

“When Camp Jened started in the 50s, it was a transitional kind of camp program. As it evolved from the 60s into the 70s, we tried to create a kind environment where teenagers could be teenagers without stereotypes and labels. And that was a byproduct of the times, you know, of social experimentation. " (Newnham 2020)

Photo by Nick Karvounis on Unsplash

Camp Jened was run by hippies who were focused on rejecting the man (society) and experimenting with their lifestyle and accepting others. Hippies were primarily white middle-class men; therefore, hippies could afford to experiment. (Britannica)

Civil rights went far beyond rejecting societal standards. Those counselors at Camp Jened had no prior experience with disabled people.

“At the front of the bus, I was not ready for the visuals of so many disabled people at the same time. I was paralyzed with fear, then someone pushed me because I was in the way, and that momentum carried me through the summer.” (Newnham, 2020)

Realized the problem did not exist with people with disabilities. The problem exists with people who don't have disabilities. It was our problem, so it’s us who need to change” (Newnham, 2020).

Research

Intersectional research begins by questioning and critiquing how the media represent marginalized groups. Scholars first note the potency and the growing number of mediums for consuming content.

Establishing a wealth of stereotypes and a history of stigma and discrimination for gender, race, class, and so on. The focus of identity in these studies is good for examining stigma and individual consumption.

But structural causes can be neglected; structural examples are barriers to healthcare and the politics around same-sex marriage. The law's bias is apparent to those it discriminates against. And still affects the people who are the hegemonic norm.

Understanding the scope of media effects requires examining both individual and structural stigma.

“The heart of media effects and intersects with many areas of study within communication, including interpersonal relationships and intergroup relations.(Abrams & Giles, 2007; Harwood & Giles, 2005).”

Researchers have recently expanded the stigma construct beyond the individual and interpersonal levels to encompass broader, macro-social forms—termed structural stigma. Link and Phelan's (2001) influential conceptualization of stigma was among the first to distinguish between stigma at individual and structural levels.” (Hatzenbuehler, 2016, p. 4)

Acknowledgement that there are structural flaws influencing the conclusions of media analysis is important because widening the view widens the number of people affected, and less specificity seems counter to the goal of raising diverse experiences, but to address structural problems that everyone overtly contributes to (eg, politics) is a more concrete point of reference. 

Potency

A single exposure to a mediated stereotype can create a cognitive link between a social group and a stereotypical trait (Dixon, 2007; Gilliam, Iyengar, Simon, & Wright, 1996; Peffley, Shields, & Williams, 1996). When triggered by media, this link may immediately influence cognitive, attitudinal, or behavioral decisions (Dixon 2002, p.248).

Because the mind naturally categorizes the world, single depictions are accessible from infancy and can shape perceptions. Therefore, recognizing media and personal bias early in life is important, as a single depiction can influence someone's view.

Media representations play a key role in shaping societal identities and values. The problem is that society and identities are not separate entities.

“Hill  Collins  (2000) sees the media’s  images being sold to the masses to create the mainstream accepted views. (Yahnke) “Limiting  portrayals  of marginalized  groups  or  teaching  us  which  bodies,  social  positions,  and  perspectives  are  deemed valuable.”(Yahnke, 2018,  p. 3)

Values and language change over time, and in the modern age, trends and slang have a high rate of turnover.

“It is particularly important for educators participating in critical conversations about identity, power, and representation to ensure they and their students have a solid grasp of intersectionality.  Fortunately, we  find   that  many  of  our  fellow  media  studies  educators  are eager  for  lesson  plans  that  will  help  them  foster  a  deeper  understanding  of  intersectionality  in the  media  classroom.” (Yahnke, 2018,  p. 3)

Conclusion

Overall, the impact of inaccurate stereotypes of minority groups is well studied on a reflective interpersonal level. Where there is a gap is in the structural systemic stigma and discrimination in a broader context of the systems everyone interacts with. The educational value of learning about a personal intersection and its impact on life is important, especially when a single depiction of a minority group is so potent that it creates an assumption and then leads to bias in interactions with groups a person is not in. 

References

Dixon, T. L. (2002). Media stereotypes: content, effects, and theory. In M. B. Oliver, A. Raney, & J. Bryant (Eds.), Media Effects: Advances in theory and research (4th ed., pp. 243-251). Routledge.

Hatzenbuehler, M. L. (2016). Structural stigma and health inequalities: research evidence and implications for psychological science. American Psychologist, 71(8), 742-751. . https://doi.org/10.1037/amp0000068

Link BG, Yang LH, Phelan JC, Collins PY. Measuring mental illness stigma. Schizophrenia Bulletin.2004;30(3):511–541.  doi:10.1093/oxfordjournals.schbul.a007098. 

Smrdelj, R., & Pajnik, M. (2022). Intersectional representation in online media discourse: reflecting anti-discrimination position in reporting on same-sex partnerships. Gender, Technology and Development, 26(3), 463-484. https://doi.org/10.1080/09718524.2022.2144100

“Generations of people are shaped by the “politically correct” ways to address topics such as disability. There is a latency between social acceptance and civil rights movements. 

Generations of people become complacent in what was considered the status quo when they were coming- of- age.” (Martin-Hays, 2022) 

In comparison to the broader #bodypositivity trend of reframing physical traits and abilities the shift is gradual but also there’s the presence of toxic when

“avoiding, suppressing, or rejecting negative emotions or experiences. This may take the form of denying your own emotions or someone else denying your emotions, insisting on positive thinking instead.”(Psychology Today)

Focusing on what you should think and should feel about your body is counter productive because the surface concept is to radically accept.

It’s harder to accept yourself based on gender,sexuallity, or disability. In Netflix;s Special the story is about Ryan a gay disabled person. He’s the special one that the show recognizes as intersectionality.

But there are different circumstances for his friend

Kim. She said,

“Sometimes I feel like as a non-skinny, non-white girl I gotta work overtime. It’s like, 'hey I’m a voluptuous brown girl, but I’m wearing a $448 dress and a blowout, so I’m safe—accept me!” (Dokoza, 2021,  Housechilling Party) 

Photo by Emil Kalibradov on Unsplash

This confession came when she discovered Ryan was lying about a party and said he’s a loser. For the sake of honesty. There is a deeper connection the both have toward intersectionality. Comparing stigmas and experiences is not useful.

The lack of perspective on how Kim lives is a gap of understanding others feelings and that self loathing and labels are not competing.

People do need community to radically accept themselves and social media is effective for body positivity but the internet is more performative than the raw moments “for the sake of being honest in a friendship like Special. 

In a later episode Kim’s parents, while they are in a racial minority they do not recognize they are judgemental of her weight. The first interaction at her home was  “Have you lost weight? I can finally get my hands around you.”  

Photo by Igor Sporynin on Unsplash

Kim is moving back home because of her debt. When she asked for a raise her boss said, “Fat chance, sorry curvy voluptuous chance.” At dinner with Kim’s family she confronts her mom.

Mom:“Seconds? I’m stuffed.

Kim: What mom you triggered? How about this, yum oh my gosh so good I feel my buttons getting tighter oh its so good. Oh God my eyelids are gaining so much weight I can barely keep them open. I love being fat… Let me get my fat ass up before I break this Goddamn chair!” (Dokoza, 2021, Joins the Crips,)  

People who are fatter can face the concept that it's their choice that leads to their weight. A physical disability is not often seen as a choice. Mental health would be the exception to this.

Mental health does have that visibility problem. But intersectionality has always had that connection.

“The body positive movement originated from fat, Black, and queer activism in response to certain bodies being so rarely visible or held as valuable in discourses and visual media (e.g., fashion or physical cultures).”  (Griffen et al. 2022 p. 2) 

Similar to the body positivity movement, intersectionality has its roots in Black feminist thought, including the work of nineteenth-century anti-slavery and women’s rights activist Sojourner Truth and Maria Stewart (1), and late twentieth-century theorists like Angela Davis, Audre Lorde, and members of the Black lesbian Combahee River Collective.” (Griffen et al. 2022 p. 2) 

“Representations of minorities often follow storylines of misery and focus on the hardships of being in these communities” (Martin-Hays, 2025) 

The representations do not show people who have radically accepted themselves. It opts for highlighting the reasons of self pity and can lead to a need for a savior. Intersectionality in research must recognize its rich history, and orient to interrogating the dynamics of power and oppression that are characterized by a reckoning with its founding purpose within Black feminist activism and scholarship (5). (Griffen et al. 2022 p. 2) 

Generations are continuously molded by the prevailing “politically correct” standards of their time, leaving each era to redefine what acceptance looks like.

Yet, as Special illustrates through Ryan and Kim intersectal identities can relate to social ideals of what you should look and be capable of—movements like body positivity aim to reframe beauty and ability, but when they suppress discomfort. Intersectionality reminds us that no identity exists in isolation; gender, disability, race, and body all interact in shaping lived experience. 

References

Dokoza, A. (Director). (2019). Special [TV series]. Netflix.

Dokoza, A. (Director). (2019, April 12). Chapter Four: Housechilling Party [TV series episode]. In Special. Netflix.

Dokozza, A. (Director). (2021, May 20). Ryan Joins the Crips [TV series episode]. In Special. Netflix.

Fritsch, K., Heynen, R., Ross, A. N., & Van Der Meulen, E. (2016). Disability and sex work: developing affinities through decriminalization. Disability & Society, 31(1), 84-99. http://dx.doi.org/10.1080/09687599.2016.1139488

Griffen, M., Bailey, K. A., & Lopez, K. J. (2022). #BodyPositive? A critical exploration of the body positive movement within physical cultures taking an intersectionality approach. Frontiers: Sports and Active Living, 1-13. https://doi.org/10.338&/fspor.#0##.&08580

Martin-Hays, O. L. (2025, March 11). Masculinity and mental health in leading men. capableism.blog.https://capableism.blog/masculinity-and-mental-illness-in-leads/

Martin-Hays, O. L. (2022, December 22). Politically correctness triggers bigotry. capableism.blog. https://capableism.blog/politically-correctness-triggers-bigotry/

Being in between, or in some ways, able-bodied and disabled. In qualitative disability research, participants described transitioning between and separating “disabled” and “able-bodied” worlds. To transition is“an integration of “physical, social, cultural and institutional elements” (Stewart et al. 2001, p.7).

Common Dialogue

All these elements can be part of creating an environment in which a person is being treated as an adult.

 People have to shift, one participant phrased it as “…people still treating me as though I am not old enough and that. It could be the way I’m acting, and a lot of times it could be just my disability. A lot of people still focus on that” (Stewart et al. 2001, p.10). 

Photo by Priscilla Du Preez 🇨🇦 on Unsplash

“You must feel so much better!” 

It was a typical response to hearing I had surgery. The surgery was never supposed to be a cure, but at the beginning, I thought it might be.  Aside from physical milestones, I worked through my resentment toward my parents for putting me through it.

I’ve realized that I didn’t feel better after it because I didn’t believe anything was wrong with me. Having a disability has always been my normal.” (Martin-Hays, 2022)

Trauma And Resilience 

O’Connell got hit by a car when he was 20, and his left side is the side less affected by CP. So my strong side was hit by a car. Because of course it did. That loss, even though on paper it was harder to mourn, was tangible; I had it. Now I have to tell people about both compartment syndrome and CP.” (StyleLikeU) 

 In the context of scholarly research, “notions of resilience do not provide opportunities for individuals to self-define as resilient or not resilient. Authors contend that definitions of resilience are plagued by hegemonic notions of healthy, normal, or valued functioning, consistent with Western, middle-class, ableist norms (Hutcheon and Wolbring; Hutcheon and Lashewicz; Tarter and Vanyukov; Ungar (Constructionist); Young, Green, and Rogers). (Hutcheon & Wolbring, 2013)

Inspiration

Resilience or inspiration has a similar problem in this context, and in the use of the emotions attached to them. They are attached to perceptions and definitions of what enduring, surviving, and thriving appear to be. The able-bodied world assumes disability has to be overcome, and asks, 

“ Would you choose not to have a disability?” 

There’s something ironic about mourning a specific version of a disabled body and wanting it back after a change like surgery. 

Change

Mourning the ability to know you can physically do things this way. It’s hard because, personally, the recovery period feels like that foot in the able-bodied side just dropped out, and now I have to work until I’m back to the same place of being in both worlds.

References

Hutcheon, Emily, and Bonnie Lashewicz. “Theorizing Resilience: Critiquing and Unbounding a Marginalizing Concept.” Disability & Society (in review).

Hutcheon, Emily, and Gregor Wolbring. “Deconstructing the Resilience Concept Using an Ableism Lens: Implications for People with Diverse Abilities.” Dilemmata 11 (2013): 235-252.

Hutcheon, E., & Wolbring, G. (2013). “Cripping” Resilience: Contributions from Disability Studies to Resilience Theory. M/C Journal, 16(5). https://doi.org/10.5204/mcj.697

Martin-Hays, O. L. (2021). Why am I more disabled sitting down? Ramapo College of New Jersey.

Martin-Hays, O. L. (2022, June 17). The simple fix. Tumblr. https://capableism.tumblr.com/post/687318757039915008/the-simple-fix

McKay, G., & Straus, J. (2015). The Oxford Handbook of Music and Disability Studies. B. Howe, S. Jenson Moulton, & N. Lerner (Eds.). Oxford Press. https://books.google.com/books?hl=en&lr=&id=3ZSFCgAAQBAJ&oi=fnd&pg=PA226&dq=crip+subculture+punk+&ots=rJ6gdAQVEB&sig=v54MO3qUFy3eefxewJ-7JrslOts#v=onepage&q=crip%20subculture%20punk&f=false

O’Connell, R. (2015). I’m special and other lies we tell ourselves. Simon & Schuster. 

Stewart DA , et al. (n.d.). A qualitative study of the transition to adulthood for youth with physical disabilities. – PubMed – NCBI. National Center for Biotechnology Information.

StyleLikeU. (2014, December 14). Gay with cerebral palsy and owning it: Special’s Ryan O’Connell [Video]. YouTube. https://www.youtube.com/watch?v=T6ALMzu6TPs&t=27s

Tarter, Ralph E., and Michael Vanyukov. Re-Visiting the Validity of the Construct of Resilience. Resilience and Development: Positive Life Adaptations. Ed. Meyer Glantz and Jeannette Johnson. Springer, 1999: 85-100.

“Generations of people are shaped by the “politically correct” ways to address topics such as disability. There is a latency between social acceptance and civil rights movements. 

Generations of people become complacent in what was considered the status quo when they were coming- of- age.” (Martin-Hays, 2022) 

In comparison to the broader #bodypositivity trend of reframing physical traits and abilities the shift is gradual but also there’s the presence of toxic when

“avoiding, suppressing, or rejecting negative emotions or experiences. This may take the form of denying your own emotions or someone else denying your emotions, insisting on positive thinking instead.”(Psychology Today)

Focusing on what you should think and should feel about your body is counter productive because the surface concept is to radically accept.

It’s harder to accept yourself based on gender,sexuallity, or disability. In Netflix;s Special the story is about Ryan a gay disabled person. He’s the special one that the show recognizes as intersectionality.

But there are different circumstances for his friend Kim. She said, “Sometimes I feel like as a non-skinny, non-white girl I gotta work overtime. It’s like, 'hey I’m a voluptuous brown girl, but I’m wearing a $448 dress and a blowout, so I’m safe—accept me!” (Dokoza, 2021,  Housechilling Party) 

This confession came when she discovered Ryan was lying about a party and said he’s a loser. For the sake of honesty.

There is a deeper connection the both have toward intersectionality. Comparing stigmas and experiences is not useful.

The lack of perspective on how Kim lives is a gap of understanding others feelings and that self loathing and labels are not competing.

People do need community to radically accept themselves and social media is effective for body positivity but the internet is more performative than the raw moments “for the sake of being honest in a friendship like Special. 

In a later episode Kim’s parents, while they are in a racial minority they do not recognize they are judgemental of her weight. The first interaction at her home was  “Have you lost weight? I can finally get my hands around you.”  

Kim is moving back home because of her debt. When she asked for a raise her boss said, “Fat chance, sorry curvy voluptuous chance.” At dinner with Kim’s family she confronts her mom.

Mom:“Seconds? I’m stuffed, Karishma. 

Kim: What mom you triggered? How about this, yum oh my gosh so good I feel my buttons getting tighter oh its so good. Oh God my eyelids are gaining so much weight I can barely keep them open. I love being fat… Let me get my fat ass up before I break this Goddamn chair!” (Dokoza, 2021, Joins the Crips,)  

People who are fatter can face the concept that it's their choice that leads to their weight. A physical disability is not often seen as a choice. Mental health would be the exception to this. Mental health does have that visibility problem...

But intersectionality has always had that connection “The body positive movement originated from fat, Black, and queer activism in response to certain bodies being so rarely visible or held as valuable in discourses and visual media (e.g., fashion or physical cultures).”  (Griffen et al. 2022 p. 2) 

Similar to the body positivity movement, intersectionality has its roots in Black feminist thought, including the work of nineteenth-century anti-slavery and women’s rights activist Sojourner Truth and Maria Stewart (1), and late twentieth-century theorists like Angela Davis, Audre Lorde, and members of the Black lesbian Combahee River Collective.” (Griffen et al. 2022 p. 2) 

“Representations of minorities often follow storylines of misery and focus on the hardships of being in these communities” (Martin-Hays, 2025) 

The representations do not show people who have radically accepted themselves.

It opts for highlighting the reasons of self pity and can lead to a need for a savior.

Intersectionality in research must recognize its rich history, and orient to interrogating the dynamics of power and oppression that are characterized by a reckoning with its founding purpose within Black feminist activism and scholarship (5). (Griffen et al. 2022 p. 2) 

Generations are continuously molded by the prevailing “politically correct” standards of their time, leaving each era to redefine what acceptance looks like.

Yet, as Special illustrates through Ryan and Kim intersectal identities can relate to social ideals of what you should look and be capable of—movements like body positivity aim to reframe beauty and ability, but when they suppress discomfort. Intersectionality reminds us that no identity exists in isolation; gender, disability, race, and body all interact in shaping lived experience. 

References

Dokoza, A. (Director). (2019). Special [TV series]. Netflix.

Dokoza, A. (Director). (2019, April 12). Chapter Four: Housechilling Party [TV series episode]. In Special. Netflix.

Dokozza, A. (Director). (2021, May 20). Ryan Joins the Crips [TV series episode]. In Special. Netflix.

Fritsch, K., Heynen, R., Ross, A. N., & Van Der Meulen, E. (2016). Disability and sex work: developing affinities through decriminalization. Disability & Society, 31(1), 84-99. http://dx.doi.org/10.1080/09687599.2016.1139488

Griffen, M., Bailey, K. A., & Lopez, K. J. (2022). #BodyPositive? A critical exploration of the body positive movement within physical cultures taking an intersectionality approach. Frontiers: Sports and Active Living, 1-13. https://doi.org/10.338&/fspor.#0##.&08580

Martin-Hays, O. L. (2025, March 11). Masculinity and mental health in leading men. capableism.blog.https://capableism.blog/masculinity-and-mental-illness-in-leads/

Martin-Hays, O. L. (2022, December 22). Politically correctness triggers bigotry. capableism.blog. https://capableism.blog/politically-correctness-triggers-bigotry/

Special is defined by the Oxford Dictionary as “better, greater, or otherwise different from what is usual.”

The phrase “special needs” is outdated because it implies that participation in daily life is typical or normal. Calling a disabled person “special” can be patronizing in mundane moments, as society then does not hold the same standards of appearance or ability. (Martin-Hays, 2021, Why am I More Disabled Sitting Down?)

'Special needs' is often used as a euphemism for 'disabled,' but it is important to see 'disabled' as a neutral, not negative, term. The Netflix show

Special, which features Ryan O'Connell, an openly gay man with cerebral palsy, explores these themes directly. 

Netflix’s Special

Photo by Juraj Gabriel on Unsplash

The narrative of Special highlights this perspective from the very beginning. Special starts with Ryan getting hit by a car; this accident gives Ryan a strange opportunity to affirm people’s assumptions about his limp being part of that. In an interview with StyleLikeU, Ryan explained that moment as 

“yes suckers I’m an accident victim now… being in an accident is relatable, where CP is foreign, gross, and no one knows what it is.”

Disabled people are not obligated to quell curiosity.  Furthermore, the show's approach to representation extends to sexuality.

“The sexual practices of disabled people are often at odds with ableist and heteronormative approaches that position sex as only ‘penetrative, spontaneous, and physical, ' which requires fully-functioning, independent, and mobile embodiment (Liddiard 2013, 18).  

Having a Sex Life as Disabled

This theme is illustrated in an episode where Ryan hires a sex worker. He arrives and at first struggles to get his clothes off, and then his legs are tight, assuming a position. I was surprised that the scene ended with the sex worker complimenting Ryan's “by far the most limber” client with CP.

Moments in which the CP name-drops demonstrate that others are comfortable with it, even when Ryan isn’t open about it.

“ Decades of disability activism and scholarship suggest that disability ‘has the potential to transform sex, creating confusion about

“what and who is sexy” and “what counts as sex”  Indeed, disabled people have a long and rich history contesting ‘normal sex’.(Fritsch et al., 2016, p. 89) 

Society often waives standards of ability for disabled people labeled as 'special.' The assertion that disabled people are both 'desiring subjects and objects of desire' (McRuer and Mollow 2012,1) is important for contesting their repeated infantilization, de-sexualization, and de-eroticization. 

Independence

Special (Netflix) highlights various relationships. In episode two, tension arises between Ryan and his mom over his plans to move out. He eventually does, but the tension persists as she tries to help him struggle. 

This tension around independence is a common challenge for many disabled people.

Living independently comes with challenges, and sometimes pushing back on protective parents is one of them. He asks her to leave and then has a handyman put the furniture together. It is the last resort because it does require calling for help. 

The show’s depiction of persistence and independence reflects wider societal attitudes.

Society assumes life is always an uphill battle for disabled people. Independence is crucial, but there is more pressure for disabled people to be less reliant on others, even if receiving support is healthy. (Martin-Hays, 2023, Disabled life in the 50s through 90s)

This social pressure also surfaces in Ryan’s social circles. Ryan let his mom assume he did it the next time she came over to set up a housewarming party he wanted. Unfortunately, the friends bailed, but not before texting: “You have a job? You have an apartment?” The texts read like they’re surprised because they did not think about disabled people being independent. 

Cerebral Palsy 

Those with cerebral palsy are not always affected mentally, and the physical limitations, which could limit their capacities for work, can be overcome with adequate jobs and using systems and procedures adapted to their deficiencies.” (Marco, 70)

In O’Connell’s book I’m Special and the Other Lies We Tell Ourselves he wants friends “like you that can commiserate with the random trips and falls or drooling.” In comparison, when he worked for the United Cerebral Palsy Alliance, he saw his normal of going to movies and friends' houses was very different from others'; he had one foot in the disabled world and the other in the able-bodied world.

References

Dokoza, A. (Director). (2019). Special [TV series]. Netflix.

Fritsch, K., Heynen, R., Ross, A. N., & Van Der Meulen, E. (2016). Disability and sex work: developing affinities through decriminalization. Disability & Society, 31(1), 84-99. http://dx.doi.org/10.1080/09687599.2016.1139488

Liddiard, K. 2013. “Sex and Disability.” Current Magazine – Spina Bifida and Hydrocephalous Association of Ontario. Spring/Summer: 18–20

Marco, M. L. (2005). Cerebral Palsy in Cinema. J Med Man 1, 66-76. https://campus.usal.es/~revistamedicinacine/Indice_2005/Revista/numero_3/ing_3_pdf/pcerebral_ing.pdf

Martin-Hays, O. L. (2021). Why am I more disabled sitting down? Ramapo College of New Jersey.

Martin-Hays, O. L. (2023, December 20). Disabled life in the 50s-90s. capableism.blog. https://capableism.blog/disabled-life-in-the-50s-through-90s/

McRuer, R., A. Mollow, eds. 2012. Sex and Disability. Durham: Duke University Press.

O'Connell, R. (2015). I'm special and other lies we tell ourselves. Simon & Schuster.

Living with CP

Cerebral Palsy is a general term for weakness of the brain, characterized by deficits in motor control and coordination.  Cerebral palsy is lifelong. According to the Cerebral Palsy Guide. Current estimates of cerebral palsy prevalence are as high as 3 cases per 1,000 children.

“Living with cerebral palsy has been the central identity that has made me different my whole life. Since I have had cerebral palsy since birth, when people ask what it's like living with cerebral palsy? I don’t have a clear answer.” (Martin-Hays, 2023)

One problem with not having clear answers is the lack of a comparison for a life without the disabled part. 

Special TV Show

There are many depictions of CP in the media. Watching the Netflix comedy Special about Ryan O’Connell’s experience taking advantage of being hit by a car to hide CP is a funny story and a premise for a TV show. Hiding part of yourself can be fueled by an internalized phobia or ism, which is what O’Connell realized was in the story after writing. But at the time, getting hit by a car was

“Being in an accident is relatable, where CP is foreign, gross, and no one knows what it is.” 

In the first episode, Ryan falls, and a child sees it and then asks if he needs help because he is limping. “That’s not my fault, I have a thing. It’s called Cerebral Palsy.”

After that, he explains CP as the technical definition of weakness in the brain. I laughed at this interaction because I have been there and can see how rehearsed and bored O’Connell seems. In the next scene, he is in physical therapy and comments on Bob, who is in a power chair and is referred to as needing catheters.

“I’m jealous of Bob. It must be freeing to be so disabled. I feel like having a mild case is like being bi-racial. I’m in limbo. I’m not able-bodied enough to be in the mainstream world. But not disabled enough for the cool PT crowd.

At least Bob knows where he belongs.” 

The comparison of being bi-racial to being disabled was a joke. Racial identity as a joke coming from a white guy isn’t the best. The PT does say he’s being offensive, and the scene moves on.

Disability Hierarchy 

“Disability hierarchy is  not about disability type alone, but rather a complex, intersectional differential valuation of disabled people regarding who can and cannot or should and should not be accommodated and integrated into a society based on various factors.” (Schalk, 408)  

The disability hierarchy is what gives the impression that Bob knows where he belongs because he’s obviously more impaired. While the hierarchy is false and breeds the sense of not being enough to be part of a community, it doesn’t stop society from reinforcing that you don’t want to be more of a minority. 

The PT says he is privileged and lucky. I know it’s referencing the fact that people with CP can be more impaired. But my read of why he’s privileged actually stems from being a cisgender white male. That background isn’t to agree or disagree on the impact of CP. It’s accounting for other factors. 

Models

There are two models for disability studies, social and medical. Social is considering the environment as inaccessible rather than focusing on the individual's clinical problems.

“The important thing to note about impairment is that impairment does not keep a person from doing anything an able-bodied person can do; however, impairment can still hold the same stigmas as a disability, especially for an uneducated public.” Kirkpatrick

Comedy in CP

Educating through comedy can break the ice with self-deprecating humor. Special isn’t focused on educating, “O'Connell said that writing truthfully about his life, for the first time, was a challenge.

 "I hadn't processed any of my stuff at all. I didn't have the language to describe internalized ableism or what it meant to be disabled in this culture. I was unpacking it in real time for a book. 

Which I would not recommend. It was too soon. I was too young. I had no business writing it. I mean, I'm glad - because I think the show [Special] is a more evolved version." (NPR) 

There’s a power in writing about identity. In his StyleLikeU interview, he describes a moment when it was “time to face the music.” I resonate with that feeling that it's time to share for me and not for them.

 “He thought it was easier to go with a false explanation that everyone could immediately understand. ‘Now, obviously lying about who you are ends up being kinda bad for yourself,’ he said.” (NPR 2021)

References

Ask Me Another. (2021, May 21). Ryan O'Connell. NPR. https://www.npr.org/2021/05/21/999056490/ryan-oconnell

Dokoza, A. (Director). (2019, April 12). Cerebral LOLzy [TV series episode]. In Special. Netflix. 

Kirkpatrick, S. “The Disney-Fication of Disability: The Perpetuation of Hollywood Stereotypes of Disability in Disney’s Animated Films.” Electronic Thesis or Dissertation. University of Akron, 2009. OhioLINK Electronic Theses and Dissertations Center. 23 Apr 2021.

Schalk, S. (2020). Wounded Warriors of the Future Disability Hierarchy in Avatar and Source Code. Journal of Literary & Cultural Disability Studies, 14(4), 403-420.http://samischalk.com/wp-content/uploads/2021/05/Schalk_Wounded-Warriors-of-the-Future_JLCDS-2020.pdf

The Paralympics are a celebration. Stephan Halking opened the ceremony with “We are all different. There is no standard or run-of-the-mill human being.”

You might donate money to foundations  during awareness months, but in pride months, you march and find community.  (Martin-Hays 2022 Disabled Pride Vs Awareness)

Rising Phoenix Documentary 

Netflix’s Rising Phoenix “With this history told in conjunction with the impactful storylines of the athletes, it’s no surprise there are goosebump-inducing, tear-filled moments paired with swells of music: the wins, the losses, the training, the camaraderie. Even the athletes are not immune to shedding a tear or two.” (LeBoeuf , 2020, p.1) 

And that angle is rooted in using pathos to connect. Looking at CP in the Paralympics, Trevor, a Paralympic sport administrator, stated: “athletes with cerebral palsy, with more severe cerebral palsy... are a very difficult image to get the press and all the rest of the media to understand.” (Purdue & Howe , 2013 p. 31)

And again, intersectionality allows society to pick what representation is right. 

Netflix’s Paralympics documentary, Rising Phoenix, opens:

“Superheroes try to save humankind, fight for success. Well, we’re quite similar. We are all superheroes because we’ve experienced tragedy—something prevented us from succeeding. That’s where strength lies. Life is a fight. We are trying to save the world.”

The film follows nine Paralympian, most of whom use prosthetics or wheelchairs. Mobility aids and adaptations are highlighted as marketing tools, with flashy gear contributing to visibility. As Patrick notes,

“Somebody in a chair, it’s colorful, flashy, they’re in the gear; somebody wearing an up-to-date prosthetic leg looks the part. Somebody with cerebral palsy probably looks uncoordinated and may not have the mannerisms to be marketed.”  (Purdue & Howe , 2013 p. 31)

How Aesthetics Matter

Photo by ThisisEngineering on Unsplash

Aesthetics help shape how Paralympic athletes are framed, often reinforcing a narrative of overcoming tragedy.

Rising Phoenix notes that most Paralympians are told life will be too hard for them. Society shapes minority representation, often relying on narrow images.

For example, society links masculinity with strength and disability with weakness, complicating how disabled athletes are perceived and valued.  

“Some may argue that the IPC inevitably shares responsibility, along with the media, for any marginalization of athletes with cerebral palsy. If the IPC provided more athletes with cerebral palsy to be used by the media, it may alter the social reception of these 'impaired' bodies into viable and credible examples of “impaired sporting” (Purdue & Howe 2013, p.27) 

Overall, the IPC's intentions are in the right place, and its representation of multiple nations is diverse.

The conflict in the games stems from broader ideas about what disability looks like.

And, as athletes, there is a norm that spectators can latch onto: the players may not walk, but the rest of them are normal. CP is one diagnosis that challenges these images, as people with CP are not only uncoordinated. On face value, many are. How inspirational are they?

References

Bonhôte, I., & Ettedgui, P. (Directors). (2020). Rising Phoenix [Documentary ]. Netflix.

Leboeuf, S. (2020, August 27). ‘Rising Phoenix’ documentary covers history of Paralympics but stereotypes disabled athletes. The Daily Texan. https://thedailytexan.com/2020/08/27/rising-phoenix-netflix-original-documentary-review-paralympics-movie-stereotype-disabled-athletes/

Martin-Hays, O. L. (2022, July 27). Disabled pride vs awareness. capableism.blog. https://capableism.blog/disabled-pride-vs-awareness/

Photo by Bo Zhang on Unsplash

The Olympics and the Paralympics are both global events showcasing elite athletes. The Paralympics, named for running parallel to the Olympics rather than for any single disability.. Sir Ludwig Guttmann founded the Paralympics after recognizing a universal desire and benefit in athletics for everyone.

Personal Reflection

“To be a man, I have to be stronger and more assertive, or to be disabled, I have to be less independent and so subordinate that others speak for me when I’m in the room. These learned societal traits can be seen in the female gender roles as well. These things are just stereotypes but are reinforced heavily and sometimes complicate being a disabled man” (Martin-Hays, 2022, Balancing Male Stereotypes and Disability)

Photo by Eser GOAT on Unsplash

Life as a disabled person involves evaluating the pros and cons of energy, time, and various other factors of other people. The hardest one to overcome is others not managing my body.

That I do 24/7, I don’t have as many will-or-can questions about being active and living life like everyone else. I do find that when I meet new people, especially virtually post-pandemic, I do take advantage of the limited camera view. I talk about rock climbing or skiing, sometimes leaving out the mono part of what I do, because it invites the specifics of how skiing has adapted.

That physical strength blends in. I like sports like climbing, where adherence to strategy and arm strength come in handy. 

The intersectionality of being disabled (a minority identity) and a man (an identity that is favorable in a patriarchal society decides its affirmations and its inspiration. Society gives and takes from you. 

Severely Disabled Sport Competitors

At the Paralympics, the event needs to be marketed to secure funding, and to do that effectively, the IPC (International Paralympic Committee) uses “flashy” prosthetics and chairs. These tools aren’t applicable to everyone and can reinforce assumptions about who is disabled enough. The classifications are complicated. 

“The term 'severe' impairment refers exclusively to individuals who possess physical impairments, as opposed to sensory or intellectual, and compete within lower Paralympic sporting classifications.

In Paralympic swimming, this corresponds to classifications (often termed “classes”) 1–5. Paralympic swimming comprises 14 functional classes. Swimmers with physical impairments compete in classes 1–10, with class 1 for individuals with the most severe impairments and class 10 occupied by Paralympic swimmers with minimal impairment.

(IPC Swimming, 2011). Other sports use different means of denoting the classifications in which individuals with severe impairments compete.” (Purdue & Howe 2013, p.29) 

Sports classes are meant to level the playing field for competition. There has to be a scale to base the awards on. But while the IPC’s mission is to enable, to create the conditions for athlete empowerment through self-determination. Paralympic athletes: the primary focus of IPC’s activities, in the context of Paralympic athletes are the development of all athletes from initiation to the elite level.” (Purdue & Howe 2013 p. 27).

The “self-determination” is interesting to me because I have heard it so often as a compliment, it toed the line between a compliment for me and inspiration for others. Taking pride in a sport and being aware of a sport are two different angles.  Awareness is acknowledging a  diagnosis, and pride is a celebration.

References

Martin-Hays, O. L. (2022, August 3). Balancing male stereotypes and disability. capableism.blog. https://capableism.blog/balancing-male-stereotypes-and-disability/

Paul “Did Jimmy tell you have Parkinson’s?” Sean “No, he didn’t. That sucks." Paul “Yeah, it’s not my favorite. So you know about it. This smuck knows about it, but I haven’t been able to tell my own daughter." Sean: Why not? Paul: I’m scared, I’m afraid she won’t see me like she used to. Won’t be just her father, I’ll be this sad old man that needs to be taken care of. I know it’s bullshit, but I’m stuck.” Season 1 Episode 5 Shrinking

The Fear in Changing Perceptions 

Photo by  Felirbe from Unsplash

Being scared of perception changes after confiding in anything personal, such as a disease/diagnosis, sexuality, or gender identity.

All of it hinges on feelings and reactions from those around you. The person who comes out and shares doesn’t control others.

Which makes it scary not to know, but to have a general experience that builds a foundation for assuming others will pity you and never see you the same after that. People need a community to fulfill social and emotional needs. 

Personal Reflection

The experiences of elderly people acquiring a diagnosis of Parkinson's or Alzheimer's are different from having a diagnosis since birth.

There are commonalities, like people pitying you and not wanting to be around you “just because” of one thing about you. Because everyone wants to live their own life doing what they can with condescension.

Elderly people may have lived their lives in a mindset of fear of disablement. The person and their diagnosis shape the experience of living with a diagnosis in many ways.

I am not familiar with progressive conditions myself. I have seen grandparents go through dementia and become dependent on oxygen and canes or walkers. Which are devices not exclusively for old people? The adjustment to the new equipment I went through when I got my wheelchair.  Shrinking is showing the progression of Parkinson’s disease. 

Photo by Jordy Muñoz from Unsplash

From the Experts: People with First-Hand Experiences

From r/shrinking or Reddit;

Mean-Lynx6476 “At this point, PD is mostly looming on the horizon for Paul, but with medication and appropriate diet and exercise, it’s not impacting his quality of life terribly drastically beyond how just plain ol’ being old impacts quality of life. Although he’s certainly dealing with some of the physical issues, at this point, it’s the psychological impact of knowing what’s ahead that impacts him the most. And that’s not a trivial impact at all, but it’s largely invisible.” 

The real-life experience of being diagnosed with Parkinson’s comes from Emma Lawton in a Ted Talk. 

The doctor said,

“It could be Parkinson's disease, it could be Huntington's disease, or it could be Wilson's disease'. And in the weirdest thing that anyone's probably ever thought,

I was rooting for Parkinson's, because the other ones you die from, and I wasn't ready to die.” (Emma Lawton, TEDxSquareMile)

Parkinson’s more often affects men than women, which puts her in the minority. Death is a legitimate reason to root against things that have that possibility.

But it doesn’t actually change the physical treatments or other interventions needed to happen to prolong life when it is that kind of diagnosis.

And as a condition’s symptoms, like tremors or spasms, are defined, the reason you're having them can make it a more concrete problem to solve. 

"[29.04.2013] This was eventually my diagnosis date. It took a little while to get there, but it was actually a day that, for me, was a day of decisiveness “I know it breaks their heart to hear Parkinson’s. And people would let me do nothing with Parkinson’s as a reason” (Emma Lawton, 2017 TEDxSquareMile)

Breaking someone’s heart because of your set of circumstances is where pity first enters the conversation.

“The end of my life’s going to be hard. And I can either be a self-pitying shithead, or I can suck the marrow out of what’s left of this amazing life. No more living in me land.”

This realization from Paul is a progression in how he comes to terms with Parkinson’s and moves beyond assumptions about how he sees himself, as others do. And the real growth and point people have a hard time with is finally asking for help, without the thought that it’s all pity, and the last thing you want is to lose independence in your own life. “ I need a favor to keep me in check, you see me sinking, pull me up.”

References

Goldstein, B., Segal, J., & Lawrence, B. (Producers). (2023). Shrinking [TV series]. Apple TV.

Lawton, E., & TedxSquareMile. (2017, June 30). What Parkinson’s Taught Me [Video]. YouTube. https://www.youtube.com/watch?v=Hs-vPqfsO0Q

Apple TV’s Shrinking Premise

Shrinking is an Apple TV comedy series set in the therapeutic offices of Jason Segel and Harrison Ford. The reception of  Jimmy (played by Segel) , a therapist who has no boundaries because he’s heavily dysregulated from grieving his late wife, has garnered mixed opinions on the show’s messaging.

While it shows grief and loss, the argument is against depicting loss in a radical or comedic way. The first episode starts with Jimmy at 3am with sex workers while he’s drunk and high. 

All while Alice, his 17-year-old daughter, is asleep. The lack of realistic consequences for Jimmy’s actions, like telling a patient he’d stop being her therapist if she stayed with her abusive boyfriend. Or when he suggests his patient Sean move into his pool house because his Dad kicked him out.

The dynamic between them is a large part of the show. While Jimmy is trying to fix others with abrasive tactics, Alice is left to have talks with Jimmy’s boss, Paul (played by Ford). Alice also has the next-door neighbor, Liz, who steps in as her parent while Jimmy is out of commission. 

The Premise in Reality

TIMES Magazine described Shrinking’s message as trying to say

“People are beautiful in their brokenness, so let’s all lean on each other and tolerate one another’s shortcomings and share our gorgeous, messy healing journeys with everyone we know. Although it’s certainly easy to mock, this radical form of acceptance isn’t without merit. But it’s also a bit of a narrative—not to mention a self-help cliché, and one that doesn’t seem best applied to the profoundly destructive behavior of an antihero who should, by virtue of his profession, possess a modicum of self-control.

Realism is not required for comedy; in fact, the comedy can come from outlandish situations. But therapy, grief, and loss have to be handled with care.   

Parkinson’s Disease: Reality and on Screen 

It is established in Season One that Paul, played by Ford, has Parkinson’s disease. The second episode presents issues of driving and becoming dehydrated as a result of symptoms. Overall, season one has very few mentions of tremors and of tremors managed by medication. By the time of writing, Shrinking’s third season has developed Parkinson's disease to include hallucinations, while medication is losing its effect. A comment on r/shrinking: Parkinson’s and your experience  Michelle0207  writes,

“Paul giving up his driving privileges, for example, was completely foreign to me. We had to fight my father tooth and nail for years before the situation was taken out of his hands and his license was suspended. Years of fighting and hiding keys and desperately trying to reason with someone who no longer had the capacity for reason.”

More representations of diseases and disabilities have the potential to resonate with those living with them. But more often impacts those who would otherwise not know about Parkinson’s as it pertains to Shrinking.

There is a scene where Paul’s partner, Julia, visits her husband, Elliot, who has Alzheimer's. I thought the mention that Paul isn’t like Elliott because he’s not “going to lose what makes him himself.”

I thought that made sense, but both Parkinson’s Disease and Alzheimer's come with complications that can equally impact behavior, memory, and subsequently how loved ones see the person with the disease.

Redditor Sopranohh said,

“One of the things that really bothered me with the Dr. Julie storyline was her saying something about being fine with Paul because he wasn’t going to deteriorate mentally. It wasn’t exactly that, but something along those lines. A neurologist would have to know that dementia can be an outcome of Parkinson’s.”

Julie is a neurologist, and Jimmy is a therapist, but that doesn't change emotional connections. People in healthcare do not always practice what they preach; people are more complicated than that.

References

Berman, J. (2023, January 23). Shrinking is an affront to comedy, psychotherapy, and Harrison Ford. TIMES, 1-7. https://time.com/6248761/shrinking-review-apple/

Goldstein, B., Segal, J., & Lawrence, B. (Producers). (2023). Shrinking [TV series]. Apple TV.

Romance and sexuality have been widely studied, yet the media often presents narrow views of what men and women seek in each other. Technology, social media, and dating apps further filter choices, while self-criticism and social anxiety can make connections difficult.

Photo by Becca Tapert from Unsplash

“Bad romance” captures how desire and disappointment often coexist. In Sex and Disability, the editors note a “pattern of approach and avoidance” in how queer theory engages with disability studies, asking what is gained and lost (Johnson 2015, p. 252).

Give and Take

I find the question of gains and losses can be applied to plenty of non-romantic situations as a disabled person. Approaching a daily task like stairs, for example. It can have that give-and-take with my energy and capacity for activity later.

Now, stairs aren’t people that talk back and give more feedback.

And still, there is a pattern of approaching and avoiding something. I know the outcome because I see the problem so regularly. Everyone has a host of different relationships. But sexual and romantic relationships are by far synonymous with the word relationship to most people. 

Photo by Micah Carlson on Unsplash

The physical and emotional aspects aren't always separated. In the queer community, there are plenty of letters denoting different types of attraction and the idea that love is love. When it comes to the disability community, I have found that intimacy is where abled-bodied people stop processing and dismiss the idea of a relationship. Because there’s pressure on firsts and imposed timelines on age, you should have a kiss, a crush, and kids. The pressure of society can be confusing and unfair to anyone. 

Life Circumstances

Johnson said, “From a feminist psychiatric disability studies perspective, being erased within the margins of the dominant sexist, heterosexist, racist, and ableist culture by another theorist working the margins produces a particularly sharp discomfort. (Johnson 2015, p. 257) 

Being in the intersection comes with discomfort. The process of internalized ableism, racism, and sexism can be hard to unlearn. And those assumptions about who or how you will be loved can be unconscious.

Photo by BoliviaInteligente on Unsplash

An example comes from Netflix’s documentary Stutz, about Phil Stutz, a therapist famous for treating celebrities like Jonah Hill with specific exercises. He has Parkinson’s and is an inspiration for the character Paul in Shrinking (2025, Apple TV)

Jonah: Where do you stand on romantic relationships?

Stutz It’s been on and off for 40 years. In general terms, she has family stuff taking her in the opposite direction. And also my health. When I got Parkinson's, it had a double effect on me.

Stutz makes jokes about himself.

Jonah, stay on track, bro. So the illness and her family stuff. I cannot relate to having Parkinson’s, but do you think that can be a crutch to not make a decision that would be scary emotionally?

Stutz Yes 100%. I think that crazy part of me is taking whatever is happening and using it to prove its point. See, the thing with me that’s not typical is the illness stuff. I think unconsciously, I was linking a relationship to being cured.

Jonah But there is no cure for Parkinson’s

Stutz That's correct. Yeah, most people aren’t sick like that. I’ve been sick for a long time.

Reflection and Connections

Within this conversation, there is deflection and doubt about how a relationship would work out. There are reasons not to pursue because of the thoughts that you bring less to a relationship than someone else. You’d be a burden, or simply, there’s no way a pretty girl/person can like me for me.

Self-pity is a category of tropes about disabled people. Wanting to be cured is a trope. And internalized ableism happens.

Another assumption or weight tied to women in this case is Bill Porter. He’s had a realistic element to the film about his life.  It hints that a client of Bill’s romantically interested in him, and that Bill doesn't recognize the signs. In their first meeting, she offers him spiked orange juice.

She sees him as a romantic interest, which is often not addressed in the media, contributing to stereotypes of being asexual or simply undesirable partners.  The Upside (2019), also based on a true story, addresses the same assumptions.

In The Upside (2019), Philip has been romantically interested in a woman he has been writing to for a year. However, he doesn’t see a straightforward way to pursue that desire.  Dell has to convince him that “the signs” are there for him to date. Phillip thinks it’s impossible because once she sees him in the chair, that’s all she’ll see. (Martin-Hays, 2023, Romance And Disability In The Upside The Impact of Relating over Inspiring a Community) 

References

Hill, J. (Producer), & Hill, J. (Director). (2022). Stutz [Film]. Netflix. 

Johnson, M. L. (2015). Bad Romance: A Crip Feminist Critique of Queer Failure. Hypatia, 30(1), 251–267. https://onlinelibrary.wiley.com/doi/abs/10.1111/hypa.12134

Martin-Hays, O. L. (2023, August 8). Romance And Disability In The Upside. capableism.blog. https://capableism.blog/romance-and-disability-in-the-upside/

Overview of Parkinson’s Disease 

Parkinson’s disease is a progressive nervous system condition that is characterized by tremors and rigidity. Parkinson’s disease (PD) is the second most common neurodegenerative disorder after Alzheimer’s disease. Several causative monogenic mutations were discovered.

However, these mutations likely only explain a small proportion of all PD, and about 90% of cases are apparently sporadic” (Lonneke & Bretleler, 2006, p.525).

Research into Parkinson’s disease is supported by Michael J. Fox’s foundation, the largest nonprofit dedicated to Parkinson’s research. While common diseases affect many, public awareness builds over time through media and public figures whose stories attract interest. In parasocial relationships, media coverage of any condition can raise public curiosity, regardless of its frequency. 

The Influence of Media and Parasocial Relationships

Netflix’s Stranger Things features Gaten Matarazzo III, who plays Dustin and has cleidocranial dysplasia (CCD).  To investigate interest in CCD, researchers used Google Trends to retrospectively analyze search interest around the release dates of Stranger Things. Using the "health" category and the term “cleidocranial dysplasia,” data were collected worldwide from July 20, 2014, to July 16, 2019. (Johnson, 2020, p. 377)

Michael J. Fox and the Public Perception of Disability Rejecting the “Sad Sack Story”

“The sad sack story is Michael J. Fox gets this debilitating disease, and it crushes him."

Yeah, that’s boring…The walking thing really freaks people out. But I won’t hide it. And you can do with it what you will. If you pity me, it’s never going to get me.” (Still 2023)

That “sad sack story” can happen with any illness or disability because of the power struggle between nondisabled people and their fears of disablement and need to have inspiration come from a minority that doesn’t need to be pitied. Historically, those marks of disability or illness have been secrets.

“President Roosevelt’s or King George’s–– and his subsequent ousting from public service. In addition to national leaders, the concealing of disability as a prerequisite to be in the public sphere.” (Moe, 2012, p. 447)  

Disability, Visibility, and Public Image

Michael J. Fox made the decision to appear in Congress as a “starting” version of himself. He did not take his medication, which demonstrated how disability affects him and the physicality of Parkinson’s disease. Not taking medication that keeps the body quiet and in check can be seen as a form of resistance to becoming a source of pity.  Parkinson’s disease is defined as a movement disorder associated with a variety of non-motor symptoms (NMS) in virtually all patients, including hyposmia, constipation, urinary dysfunction, orthostatic hypotension, memory loss, depression, pain, and sleep disturbances (Panel 1). (Tolosa, Garrido, Scholz, Poewe, 2021, p.3)

“You can’t walk, you can’t use the bathroom, that’s real.” Fox repeatedly uses the word real when describing his life with Parkinson’s disease. There is a disconnect between the mind and what really happens on a mechanical level. In my experience with stiff and spasic muscles,  there can be a desire to use momentum once the body starts moving. The difficult part is slowing down.

Movement and Momentum

In Fox’s documentary, his physical therapist explains that slowing down gives the body time to catch up and compensate. It reminded me of similar speeches from my PT. Fox knows he can do it, but feels the lack of control over his body. “Your speed because of who you are, just slow down,” Fox interrupts in between, because of who you are, and slow down. He says, “I want to get it done.”

Persistence comes with the territory of disability, in my opinion. There’s so much media saying living with a disability is brave and inspirational. But what people don’t see are the real facts about tasks, falls, or keeping medication schedules to function and functionally mask the natural mechanics of part of who you are.

References

De Lonneke, L., & Bretleler, M. (2006). Epidemiology of Parkinson's disease. The Lancet Neurology, 5(6), 525-535. https://doi.org/10.1016/S1474-4422(06)70471-9

Guggenheim, D., Cohen, W., Marion, A., & King, J. (Producers), & Doscher, T. (Director). (2023). Still [Apple TV Film]. Concordia Studio. 

Johnson, A. L., Torgerson, T., Cooper, C., Khojasteh, J., & Vassar, M. (2020). Public Awareness of Cleidocranial Dysplasia After Season Releases of Stranger Things. JAMA otolaryngology-- head & neck surgery, 146(4), 377–378. https://doi.org/10.1001/jamaoto.2019.4791

Moe, P. W. (2012). Revealing rather than concealing disability: The rhetoric of Parkinson’s advocate Michael J. Fox. Rhetoric Review, 31(4), 443-460. https://doi.org/10.1080/07350198.2012.711200