Mainstreaming Disability: From Sidelined to Frontlines

By August Butler

Excerpt from Shatonya Wright

Edited by Charissa Albert

Throughout the history of disability activism, the issues of objectification, dehumanization, and segregation have been the predominant adversaries of sociopolitical progress. During the height of the 504 activist movement in the 1970s, disability advocacy centered around attaining widespread accessibility and disassembling political structures that breed inhumane treatment of disabled people. Today, disability activists face the same issues at the hand of degrading rhetoric. A modern pioneer of disabled visibility, Stella Young, was a comedian, journalist, and activist with osteogenesis imperfecta, or brittle bone disease. In Young’s 2014 TED Talk, “I’m not your inspiration, thank you very much,” she reflects on various life experiences where her disability led people to view her as extraordinary and brave for simply living an average, unremarkable life. She tells stories about the praise and commendations she’d received from people who were “just kind of congratulating me for getting up in the morning.” Young coined the term “inspiration porn,” defined as non-disabled people using people with disabilities as a way of inspiring themselves. Young notes that she uses “the term porn deliberately, because they objectify one group of people for the benefit of another group.” Due to the belief that disabled people are inherently below average, normates compare themselves and their abilities to disabled people with sentiments like “it could be worse” or “if they can do it, so can I,” as a way to motivate themselves and “put your worries into perspective” (Young). Young’s given examples of inspiration porn are the images often passed around social media that depict people with disabilities doing what would be considered “normal” everyday activities if disability was removed from the equation, paired with the above phrases of motivation. Inspiration porn both gives non-disabled people the permission and platform to objectify people with disabilities, and spreads the idea that people with disabilities aren’t equal citizens with the same capabilities as normates.

Young references an inspiration porn quote, “the only disability in life is a bad attitude,” saying that “the reason that’s bullshit is because it’s just not true, because of the social model of disability. No amount of smiling at a flight of stairs has ever made it turn into a ramp.” The “toxic positivity” ideology of self-confidence and hard work prevailing over lack of accommodations and accessibility is common in inspiration porn. But if one subscribes to the social model of disability theory, which Young summarizes as the belief that “we are more disabled by the society that we live in than by our bodies and our diagnoses,” this becomes completely illogical. What disabled people need is not for normates to be impressed, but equal opportunity and accessibility, which would likely result in equal expectations once the true capabilities of disabled people are shown.

Being taught the term “inspiration porn” and understanding it fully is a bit like being told to manually think about breathing or blinking. Once heard, it’s noticed relentlessly. It’s almost inescapable in most forms of media, especially reality shows and the use of tropes in television, the demented twin children of yellow journalism. Disabled people are used as plot props to convey a moral, usually surrounding equality or kindness, without ever touching on their actual lived experiences. These cases of inspiration porn in mass media are harmful to the disabled identity, creating a narrative of inadequacy that heavily influences the real-world perception of disabled people. Often, consumers simply don’t have the critical reasoning skills to notice when they’re being preached to, leading them to carry misrepresentations of disabled people from entertainment into their everyday interactions. This phenomenon can be contextualized by hearing real-world testimonials from disabled people and their support systems, detailing the degrading misconceptions fostered by inspiration porn, and how their lives have been consequently altered. Shatonya Wright is the primary caretaker for her disabled son. The following is her account of how inspiration porn impacts their lives.

My name is Shatonya, and I’m a forty-four-year-old mother of two wonderful sons. I work full-time and recently returned back to school to pursue my dream of becoming a registered nurse. My life is a balanced chaos that requires me to wear many hats. Few people can understand the structure of my day-to-day life unless they’re a caretaker of a child or person who is sick or disabled. This role can be lonely, but I have good friends that I can talk to, and my faith keeps me grounded when times get rough. Furthermore, when I feel that I am at my breaking point, I look to my son Quinton, and I am instantly re-energized to keep going for him. People with “normal,” mundane lives often inadvertently offend me with their condescendingly kind words or well-meaning behavior. Even my family are bystanders in my life, offering an “atta girl” or “you’re so brave,” but providing no further assistance or genuine engagement. The effects of inspiration porn are not limited to the person with a disability, the off-putting sentiments often extending to the family or caretakers of that individual as well. Parenting is tough, even when a child doesn’t have a disability, illness, or limitation. That strain is often magnified when a child is born with or acquires a disability, and the social impact of inspiration porn doesn’t help. I’m the mother of a thirty-year-old son with diagnoses of autism, cerebral palsy, developmental delay, and intellectual disability. My son is non-verbal and, according to his doctors, has the intellectual capacity of a six-year-old. As his mother, I am not only his full-time caretaker but his barber, nutritionist, advocate, translator, interpreter, and protector. I often tell people that “I am his voice; he is my heart.” There are times when we’ve been out, just shopping or running errands, and I receive unsolicited praise from strangers. They say condescending, thoughtless things like “you are so strong,” or “how do you do it?” or “now that I see your situation, I’ll never complain about how needy my kids are,” or my personal favorite, “meeting you makes me want to go home and kiss my kids!” They say all of these things with a smile on their face, completely oblivious to how rude the comments are, often looking away from my son as if seeing him is just too much to bear. My parenting experience is not meant to inspire stressed-out parents to be more patient, to do more, or to push through trouble at home, but to see the commitment that I make to my children is no different than theirs.

Practicing acceptance and inclusion in my home had unexpected benefits. The patience and love that I show to both my children has set the standard of inclusion for my youngest son. I didn’t realize the impact of my actions until he went off to college and, in his Sophomore year, was paired with two roommates on the autism spectrum and one with ADHD. He didn’t “look” at them; he “saw” them. He didn’t run away or treat them with kid gloves. He dove right in! They talk about each other’s strengths, weaknesses, and peeves, look out for one another, respect each other, and push each other. He is also patient and kind when those qualities are needed. I couldn’t be more proud. He is paying it forward by teaching others on campus that inclusion is the key to harmonious relationships and that disability should not determine whether one is seen or not. Perhaps if we educate our kids on inspiration porn and the damaging effects it has, we can reduce or eliminate this horrific behavior altogether.

Prior to the assigned readings in this class and watching Stella Young’s TED Talk, I couldn’t put a name to what that experience felt like, but with the label of inspiration porn, I now know that this language is a degrading, objectifying, and nasty way for able-bodied people to put down someone they view as inferior to make themselves feel better. In the end, the joke is on them, because the love that I give to my child is unshakeable. They could only hope to experience the joys and the hardships that I do in caring for him or the peace of mind I feel knowing that my son is loved, safe, and seen by me in the best or worst of times. 

Inspiration porn is the quintessential “looking, not seeing” method of acknowledging disability. By taking the person out of “person with a disability,” normates use the perceived lesser capability of disabled people to justify objectification, lack of empathy, and exploitation, even though the segregation that causes these prejudices is at the hand of normate ableism in the first place. The cycle of a dominant group creating a bias and then using the effects of it to give grounds for their demeaning behavior is something that’s seen again and again in social justice movements throughout history. By creating inspiration porn, normates don’t only degrade disabled people for their own personal gain, they take the blame off of themselves. When disabled people don’t have the capabilities of able-bodied people, it’s because of inaccessibility. But if able-bodied people believe that “the only disability in life is a bad attitude,” it becomes the disabled person’s fault that they can’t simply grin their way into inclusion. 

In Jay Dolmage’s article “Disability Rhetoric,” he analyzes the various tropes and abuses of disabled people in the media that create real-world perspectives. One of the perspectives he defines is “the myth of overcoming or compensation,” or the “super crip.” Dolmage explains that “in this myth, the person with a disability overcomes their impairment through hard work, or has some special talent that offsets their deficiencies.” The “super crip” myth is a subset of inspiration porn. It objectifies and sensationalizes disability to assuage normates’ emotions, but the action the audience focuses on isn’t everyday activities, but extraordinary behaviors. In instances of extreme, illogical optimism from disabled people in distressing situations, the “super crip” myth and inspiration porn work together to create the “toxic positivity” ideology previously defined. Dolmage defines the super crip myth as “a demand placed upon disabled bodies,” forcing them to have exceptional talent in order to make up for their disability. Otherwise, they have no value to an ableist world. Inspiration porn is also a demand, one that forces disabled people to stay complacent and voiceless in order to serve normates. Both phenomena shape social perspective by objectifying disabled people to take the responsibility of awareness off of able-bodied people, “because the audience doesn’t have to focus on the disability, or challenge the stigma that this disability entails” (Dolmage). The audience focuses on themselves instead, particularly in relation to the “other,” which is disabled people. The neglect of responsibility, “toxic positivity,” and the dehumanization of being an object of inspiration surface not only socially, but medically as well. The following is a reflection of inspiration porn and the “super crip” myth by August Butler.

My name is August Butler, known colloquially as Gus, or “Goose” by my relentlessly cheesy sister. I’m a born and raised Atlantian (though nobody says that, just like they don’t call it “Hotlanta”- where did that even come from? It’s not that hot here), a sibling, a musician, a writer, an artist, and a student. I’m smart, creative, blunt, eccentric, stubborn, arguably too ambitious, hopelessly romantic, and honest to a fault. I’m a multifaceted, daedal conundrum of a teenager with unregulated access to a thesaurus, a love of classic literature, a passion for scrapbooking, and a disability. For my entire life, I have been reduced to nothing but the latter. My disability is an overarching punctuation mark on an endless list of attributes, changing the tone and meaning of each one and constraining me into a secondary class of humanity against my will. I have so many fascinatingly strange qualities that define my personal identity, such as my crooked teeth and musical prowess and astonishingly large collection of can tabs. But to the authoritative figures of my life, it seems that the only unique quality I possess is that I’m disabled. That is the forefront of my being, the iron curtain covering the window to my whole self, and the black spot of ink on an otherwise colorful and well balanced artwork, throwing off the composition entirely. Every other thing about me that is rich and important simply exists as compensation. In the eyes of the medical world, I became what’s known as the “super-crip,” a caricature of myself that experienced joy and had talent only to make up for my disability. Until my disability surfaced, I wrote and performed because I loved making music. I had passion, drive, and skill, and those were the things that made me prodigious. Then I became sick, and the only reason I was so adept in the arts and academics was as a desperate recompense and attempt to distance myself from illness, which was heavily encouraged by my normative superiors. The reduction of my individuality to fit only a singular label of disabled began when I was young, and sticks with me today.

I spent most of my childhood sick. I was healthy as a young kid, generally happy, with quiet tendencies and a vivid imagination. I liked my pet cats and my favorite corduroy overalls, and I had a group of friends that stuck with me, even when that moron kid with the oversized bike helmet called me a poopy-head in first grade. I wrote music and poetry and prose, understanding language and art in a rare way for a child so young. I liked life, and I liked living it. But when I was in second grade, I caught a string of relentless illnesses, beginning with strep throat and rapidly covering the grounds of scarlet fever, countless sinus and ear infections, severe tonsillitis, E. Coli, and pneumonia. This was a result of my bruised immune system, weakened from my tussle with lyme disease and organ inflammation. When my chronic beta-hemolytic streptococcus resurfaced around age twelve, it began attacking my brain tissue instead of the actual strep bacteria. This phenomenon, Sydenham’s Chorea, is a rare illness caused by autoimmune disease. It gave me a debilitating stutter, left me without the use of my hands or legs, and caused rapid jerking movements in my limbs. I was constrained to a bed and barred from participating in the life I liked so much. I spent months being passed around from doctor to doctor as a strange marvel, like a basketball with whooping cough. I quickly went from being a musical prodigy to a medical one. My life was completely different, unquestionably for the worse, and I didn’t know what I had done wrong. 

I was told constantly how “brave” and “strong” I was by my trusted figures of authority, and how mature for my young age I was to put up with their inadequacy in helping me. But I didn’t want to be brave, I wanted to be happy, and I wanted to be treated like a person again. The unrelenting toxic positivity from my doctors descending on me like a hailstorm combined with the fear of becoming a burden to my mother, who was suddenly faced with being a full-time caretaker, drove me to submission. I was the perfect gold star deviant, a freak on the edge of humanity that knew their place and stayed grateful. I was praised for being silent and passively accepting my fate as a permanent fixture in the margins of medicine. They were so sorry they couldn’t help, but I was battling it like a champ. They didn’t know what to do, but at least I was still grinning through it all. I was taught that I’m only as good as my brightest smile, and if I felt hopeless, it wasn’t anyone’s fault but mine for having a sour outlook. I learned quickly to conceal my emotions. I was only as good as my attitude, and if I had to be a burden on my loved ones, I was going to be a happy one. 

Inspiration porn taught me that the only disabled people with worth are the ones who act as symbols of resilience and strength, battling against their hardship, but still not drawing too much attention to themselves. I knew that gold star deviants were complacent in their dismissal and objectification, and if I ever stopped lying about what was wrong, I lost all of my value, and I might as well not be alive. This ideology stayed with me after the eventual treatment of my Sydenham’s Chorea, all the way to my incredibly late autism diagnosis- a diagnosis which was late directly because I was hiding my traits as a result of the needless praise for my synthetic optimism. I’d been masking all my strong emotions, social misunderstandings, and behaviors that may seem “abnormal” while simultaneously trying to keep my body running on a broken immune system and a brain that didn’t understand itself. Plus, I did it all alone, because gold star deviants are brave and strong and self-reliant. They don’t cause a fuss, and they never, never ask for help. I hadn’t even turned thirteen. I learned then what most neurodivergent people come to understand- that in the eyes of an ableist structure, a disabled person is only worth how well they can mask. Otherwise, that iron curtain of disability would shroud my real personality forever, leaving me an empty husk of inadequacy and illness. I spent my youth cowering behind a persona of positivity, knowing that the slightest sliver of displeasure with my situation would render me nugatory. I was no longer a child, let alone a person, reduced to an object of relentless optimism and endless, all-encompassing shame. Nobody should have to live their life in fear of disappearing behind their identity. Building my sense of self back up has been a long, exhausting, and wholly rewarding task. Being used as inspiration porn stifled my expansive, vivid personality, and I’ve only just realized how much more there is to me than fear and service to normates.

There’s also a complex political history surrounding ignoring and erasing disabled people for the sake of ease. Countless movements of activism and social justice have centered around disabled rights, aiming to break down the very conventions of objectification, infantilization, exclusion, and rejection that inspiration porn perpetuates. The 2020 film Crip Camp tells the story of Jened, a camp in the Catskills created for disabled kids, where they could come together in a space designed for them. An environment of this kind is incredibly rare. Larry Allison, the able-bodied camp director, says that “Jened was an opportunity to try and do some different kinds of things… what we tried to do was provide the kind of environment where teenagers could be teenagers, without all the stereotypes and labels.” Camp Jened stood against every rhetoric inspiration porn encourages, letting people with disabilities live full lives with interpersonal connections and access to common activities, without the burden of medical assistance, accessibility, prejudice and bias, or social perception prohibiting them. At Jened, disabled people had the access and respect of able-bodied people. They’d never realized that was possible before.

Jim LeBrecht, a director, producer, and writer of Crip Camp, was a camper at Jened in the 1970s. Born with spina bifida, he recounts his time at Camp Jened, and the contrast between his inaccessible life at home and the haven that Jened provided. LeBrecht talks about the issues he was having with his body at the time, specifically with bladder control, and the terror he felt trying to blend into a community of “normal” teenagers back at home while he was trying to hide wearing diapers and a urostomy pouch, things that could be used to humiliate him by his able-bodied peers. But Jened was different- it was a place to let go. He says that “at camp, everybody had something going on with their body. It just wasn’t a big deal.” Another Jened alumnus, Denise Sherer Jacobson, says that “it was so funky. But it was a utopia. When we were there, there was no outside world.” Judy Heumann, a disabled counselor at Jened at the time, talks about leading the campers through listening, as she “felt like it was important to be inclusive… it made people feel like they were more part of what was happening. It was more free and open than certainly what I was experiencing in my day-to-day life at home.” Heumann made sure that at Jened, even in the most trivial of conversations and decisions, every single person had a voice. “We knew that we were all being sidelined,” Heumann says. “We didn’t want to sideline anybody, we wanted to hear what everybody had to say, we were willing to listen.” LeBrecht says that “what we saw at the camp was that our lives could be better. The fact of the matter is, you don’t have anything to strive for if you don’t know that it exists.”

Judy Heumann went on to start the activist group Disabled in Action, the product of a lawsuit she filed against the Board of Education, the flourishing civil rights movement in the seventies, and the increasing publicity surrounding discrimination, institutionalization, and the uprising of disabled voices. Armed with knowledge, proud morals, and rage toward the almighty American government, she spearheaded the fight to provide national accessibility. Heumann’s voice was a crucial component to the disabled rights movement, pioneering the 504 Sit-in of 1977 and the consequential passing of the 504 section in the Rehabilitation Act of 1973. This section requires the reconstruction of public structures to make them accessible through accommodations such as elevators, ramps, accessible toilets, and curb cuts, and integration for disabled people into spaces they were previously excluded from. Heumann organized a number of protests to raise attention to this problem. Ann Cupolo Freeman, another former Jened camper, says that when Heumann needed to make a point, “you get the call to action. ‘To the barricades!’ You know, Judy would call it.” Corbett O’Toole, a disabled activist involved in Heumann’s protests, says that during the 504 sit-in, “the FBI really ratcheted it up. There was, like, three a.m. fire alarms and bomb scares.” However, O’Toole explains, Heumann told them not to leave until they got her signal that the bill had been signed, no matter what. O’Toole says that the protesters listened without hesitation, as they were “more scared of disappointing Judy Heumann than we ever were of the FBI or the police department arresting us.” According to Dr. William Bronston, who attended Heumann’s protests, “you had to back up. I mean, you had to back up if you were on the wrong side of that young woman.” Through really seeing her disabled peers, Heumann earned respect, persecutors be damned.

During the twenty-eight day 504 sit-in, Heumann held nightly strategy sessions with every protester in the building. Nobody was left behind or “sidelined,” like Heumann knew they were by the rest of the world. “People have to be engaged and feeling like they made a difference,” Heumann explains. “Otherwise, people weren’t gonna stay there all that time.” Troops of former Jened campers joined in with Heumann’s protest, using the understanding of injustice and ignorance they had gained from Jened to drive them through the harsh conditions of the sit-in. “You can’t imagine what the 504 sit-in was like. It was camp!” O’Toole explains with joy. “Everything we learned at crip camp was what we did there.” Heumann’s need for equal speech and giving everybody a voice stayed with her after Jened, having the same value in a world altering movement that it did when they were discussing what to serve for dinner at camp. Giving the persecuted a platform is indescribably valuable to activist movements. When everybody has a voice and nobody is unimportant, no matter the opinion, method of speech, or disability, they discover that they have a voice, and often resolve to never let it be silenced again. That is seeing. 

Today, we can observe products of this movement in everyday life. Most people can look around their community and spot immense changes over the past few decades, such as construction on their offices or school buildings to add elevators, ramps, and accessible toilets, sidewalks in their neighborhoods being torn up and redone to add curb cuts, brail added to signs or chirping beeps ringing from crosswalks. This progress is obvious not only in physical structures, but in abstract, societal structures as well. In education, great strides have been made with accommodations. Aptly named 504 plans and Individualized Education Programs (or IEPs) are systems in place to provide disabled students with the support they need to learn alongside able-bodied students. These plans are a perfect example of integration, as they give disabled people their right to public education, while still acknowledging that they may need a different method of learning than able-bodied children. We’re beginning to see that these kids are capable and smart without ignoring their disabilities. Special education programs and institutions were looking, while IEPs and 504s are seeing. There are many developments where disabled and able-bodied youth become one collective in university settings as well. College campuses have dorms with a mix of neurodiverse and disabled individuals who are paired with non-disabled students. As for inclusion extending past education, many offices offer jobs to disabled workers through inclusivity initiatives. Local retail stores now have people with varying disabilities employed, independent, and happy, while forty years ago they may have been rejected from the store entirely, even as a patron. The integration of disabled people into everyday society is an incredible leap that’s been made in the past few decades, but there’s still so much room to grow. Inspiration porn’s fairly recent growth in media is a worrying step back.

Camp Jened, the 504 movement, and Heumann’s inclusive ideology are the complete opposite of inspiration porn, toxic positivity, and the “super crip” myth. Inspiration porn is a method of objectifying the disabled, stripping them of their humanity and ignoring the fact that, if the world was accessible, disabled people would often not be any less capable than able-bodied people. Heumann saw that the public perception of disability and lack of accessibility was feeding exclusivity and segregation, and it needed to be dismantled. She wasn’t scared of stepping out of bounds, or intimidated by those with colossal amounts of power. As Heumann said, “if you don’t respect yourself, and if you don’t demand what you believe in for yourself, you’re not gonna get it.” She didn’t give a single thought to the condescending rhetoric born from low expectations and discrimination, taking her life and the lives of her community from the go

vernment and putting it in their own hands, changing the structure of the world in a permanent way. As Stella Young said, “we are more disabled by the society that we live in than by our bodies and our diagnoses.” Camp Jened knew this before anyone else, and sought to create an environment that didn’t entertain prejudice or recognize oppressive systems. Larry Allison knew that “the problem did not exist with people with disabilities. The problem existed with people that didn’t have disabilities. It was our problem, so it was important for us tochange.” People who participate in inspiration porn have the exact opposite philosophy, and that must change if disabled people are ever going to be treated as truly equal. Allison directed a camp where “teenagers could be teenagers,” and it’s important now that inspiration porn is noticed, called out, and abolished, so that people can be people.

Works Cited

Crip Camp: A Disability Revolution. Directed by James Lebrecht and Nicole Newham, performance by Lebrecht, James et al. Higher Ground Productions, 2020. Netflix app.

Dolmage, Jay, and Lennard J Davis. “Disability Rhetoric.” Beginning with Disability, Routledge, New York, NY, 2018, pp. 28–36. 

“I’m Not Your Inspiration, Thank You Very Much.” Performance by Stella Young, TED Talk, Apr. 2014, www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much. Accessed 23 Sep. 2023.