Daniel Hur

Dr. Foss

ENGL 384

24 April 2020

            For the process of my story, it took some time for me to come up with an idea for a story. Part of the reason that I came up with the hockey story had a lot to do with the fact that I knew someone that I grew up with that also had a head trauma similar to that. Because of the head-trauma he received while he was playing football, he had trouble with aspects of his life such as focus and concentration. Thinking of him, that was how I came up with the character of Penelo, in which the sports that she took part of caused her to have a serious head trauma. I also tried to have Penelo struggle with other disabilities like PTSD. Usually most people seem to think of PTSD as an ailment that affects people like war soldiers; however, the truth of the matter is that people with PTSD can live very ordinary lives. Sometimes it can be an every day aspect that causes a person to suffer from PTSD. Ultimately this is how I came up with the inspiration of Penelo and the problems that she suffered from.

            Some of the issues with depression that Penelo struggled with also applied to me. Growing up, I was also taken to a lot of therapists for social anxiety. This allowed me to find closure for some of the problems that I had. One of the ways that the therapists helped me was through the usage of medication. My parents had a lot of mixed feelings when it came to medication, which is how I came up with the inspiration for the fact that Penelo’s parents had some problems with it. I wanted to make both Penelo and Dr. Brushae be really close because I wanted the tragedy that occurred towards the end to have a great weight. It was like Dr. Brushae’s presence was no longer needed in the healing process for Penelo.

            After drawing from all of these experiences, I started to make a draft of the story. In the story, I found that the memories that I had of being tested for depression naturally started to manifest itself across the pages of the first draft. Of course, I felt like the story needed a lot of polishing, so I wrote another draft. In the second draft I tried to clear up some of the character interactions, and I did my best to make each of the characters sound like they are talking like human beings. This is how I managed to come up with all the human characters because most of them are based off of people from my own experiences.

            All in all, that is how I came up with the story for Penelo. I managed to find that it was not difficult pulling from my own experiences and incorporating it into a narrative style. However, actually polishing the draft was the main struggle that I had. Through the character of Penelo, I was able to write about some of my experiences.

Words: 500

The documentary Crip Camp (available on Netflix) tells the story of the beginning of the modern Disability Rights Movement and the fight for the passage of the Americans with Disabilities Act (ADA). Many of the movement’s leaders were alumni of a summer camp for young people with disabilities – Camp Jened. The documentary opens with footage from the 1970s from Jened, which was founded in 1951 for children, teens, and adults with disabilities, primarily autism, cerebral palsy, and polio. There are several overarching themes within the film that mirror class discussions and readings, including the transition from the medical model to the social model and a discussion of sex and disability. The film falls short a bit in its discussion of race and disability. This paper will analyze how Crip Camp, which premiered in January of this year, fits in with a semester’s worth of theory and will aim to persuade readers that this film is a significant addition to the field of disability studies.

First wave disability studies

The movement to push for the passage of federal legislation to guarantee disability rights was a reflection of “first wave” disability thinking. This school of thought, in line with many first wave movements for the empowerment of marginalized people, calls for the “establishment of the identity against societal definitions that were formed largely by oppression… The first phase also implies a pulling together of forces, an agreement to agree for political ends and  group solidarity, along with the tacit approval of an agenda for the establishment of basic rights and prohibition against various kinds of discrimination and ostracism” (Davis 11). 

This construction of a singular identity based on disability in opposition is evident from the opening scenes of the film, which center around the experience at Camp Jened. Jim Lebrecht, who co-directed and produced Crip Camp and who is disabled himself, was 15 years old when he was a camper at Jened. He talked about his struggles trying to fit in as a teenager at a public high school who had been wearing diapers for most of his life. He said that the feeling of isolation disappeared at camp, where “everybody had something going on with their body. It just wasn’t a big deal” (Crip Camp 2020). The film also asserts that the “hierarchy of disability” that is so often prevalent in public perception disappeared at Jened:

“At home, some people had a hierarchy of disability,” said Denise Sherer Jacobson, who has Cerebral Palsy. “The polios were on top because they looked more normal, and the CPs were at the bottom. But at Jened you were just a kid.” 

At Jened, former campers said, the distinctions between specific disabilities blurred in favor of uniting around a common experience. “The world wants us dead,” said activist and former camper Judy Heumann later in the film. “We live with that reality. If you want to call that anger, I call that drive.”

Similarly, Crip Camp portrays a time period that is moving away from the previously-favored medical model, in part due to increasing scrutiny of the horrific conditions that came with institutionalization. That transition is also evident throughout the film. An able-bodied former camp counselor remarked that “we realized 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 to change.” That sentiment is certainly emblematic of the social model of disability studies.

Race and disability

The intersectionality of race and disability is often overlooked in discussions of both, and Crip Camp isn’t much of an exception. Protests and activists featured in the film demonstrate some diversity, but it’s certainly not a truly representative sample. At one point, Lionel Je’Woodyard, a Black abled bodied former counselor from Alabama, says that “whatever obstacles that were in my way, being a Black man, the same thing was held true for individuals in wheelchairs.” The film in some ways shies away from an open discussion about how race and disability intersect: it interviews a disabled Black activist, but never asks what it means to be Black and disabled.

Let’s talk about sex

In contrast, Crip Camp absolutely nails (ha) its discussion of sex and disability. Flashbacks to time at Camp Jened showcase the importance of romantic – and sexual, as evidenced by an outbreak of crabs – relationships for the disabled. Not that an STI is a laughing matter, but the crabs scene is very light, and it is reminiscent of the kinds of legends you’d hear about from traditional summer camps. The campers are giddy, and the counselors are a little bewildered – certainly surprised that the teenaged campers were in fact having sex. 

“There was a romance  in the air, if you wanted to experience it,” commented Heumann. Former campers spoke of makeout sessions behind the bunks and the summer romances common at all summer camps. In footage from the camp, campers talk about how when people see them, they’re not seen as man or woman: they’re seen as a disabled person. Mollow and McCruer pose these questions in their introduction to Sex and Disability: “What if disability were sexy? And what if disabled people were understood to be both subjects and objects of a multiplicity of erotic desires and practices?” (1). Crip Camp makes the case that although that should be the desired outcome in understanding sex and disability, society wasn’t there 30 years ago, and it likely isn’t there now. 

One of the most impactful moments of the film is when Denise Sherer Jacobson interned at United Cerebral Palsy and had an affair with the bus driver. “I wasn’t getting any younger,” Sherer Jacobson said, “and I didn’t want to die a virgin.” Later, Sherer Jacobson recounts how she experienced a horrible abdominal pain and went to the hospital. Only after the doctor removed a perfectly healthy appendix did he consider that in fact, she had gonorrhea. “It was all because the surgeon decided ‘how could I be sexually active?’ I mean, look at me.” The idea that someone with Cerebral Palsy having sex was so incomprehensible – “depicted in terms of tragic deficiency or freakish success, as Mollow and McCruer put it – that at no point did medical professionals even consider it a possibility. This portrayal of sex and disability as being so distant from each other that able-bodied individuals are unable or unwilling to give the concept any thought was especially poignant because it demonstrated how misconceptions about disability can and does lead to discrimination and malpractice in medical treatment. 

Political advocacy

The heart of the film is Judy Heumann, alongside other Camp Jened alumni, fighting for federal recognition of disability rights. Crip Camp is incredibly successful at reminding viewers that it was very, very recent that no one was required to treat the disabled with any dignity or respect. The documentary covers the “504 Sit-In,” which lasted 25 days, and the long activist struggle in securing the long overdue regulations enumerated in Section 504 of the Rehabilitation Act. Section 504, and 20 years later, the ADA, are absolutely essential in guaranteeing disability rights at the federal level, and there is no question that they were milestone pieces of legislation. However, and Crip Camp makes this clear, the legislation is not enough.

In one of the most powerful moments of the documentary, Judy Heumann addresses a group of activists after the 504 regulations were signed. It’s a celebratory moment, but Heumann’s voice breaks: “You know on the one hand I’m sitting here feeling like I should say everything is wonderful… I’m very tired of being thankful for accessible toilets,” Heumann said. “If I have to feel thankful about an accessible bathroom, when am I ever going to be equal in the community?” That point, that disabled activists have to fight unbearably hard for legislation that does the very bare minimum, and the implication that we are still a long way from equality, is part of what makes Crip Camp great.

Public memory

Crip Camp is an important reminder of how easy it is to forget the struggle for equality. For those who have never known a world without the Americans with Disabilities Act, the history of its passage is more or less lost. Pre-college, I was taught about (a sanitized version) of the Civil Rights Movement and about the fight for women’s suffrage. I hadn’t even heard of the Disability Rights Movement until college, and I’m someone for whose family the ADA matters deeply. A failure by the public to learn and understand the histories of marginalized groups certainly is not unique to disability studies, but it is a travesty nonetheless. Crip Camp is very effective in its telling of the events leading up to the 504 Sit-In and the fight for the ADA, but that efficacy only matters if people watch it.

It’s worth noting that we’re finally hearing this story in full in part because Barack and Michelle Obama are executive producers of the documentary. To be clear, Crip Camp tells a really important story and tells it well – it should be a way for disability studies to be brought into the mainstream. It’s directed by someone close to the story who’s disabled himself and never portrays disability as something to be pitied or something to be admired just because of its existence (Crip Camp is not disability porn). At the same time, I worry a bit that disabled stories are only given the limelight when there is significant wealth and power involved.

Crip Camp’s arrival on Netflix will hopefully allow larger audiences to focus on the too-often ignored field of disability studies and activism. Its portrayal of the complexity of disability is extremely compelling. Though it falls short in a few areas, it is a useful tool in applying some disability theory in practice. This documentary should be celebrated, and it should be seen.

Word Count: 1657

I pledge – Kate Seltzer

Works Cited

Crip Camp. Directed by James Lebrecht and Nichole Newnham. Higher Ground, 2020.

“The End of Identity Politics and the Beginning of Dismodernism.” Bending over Backwards

Disability, Dismodernism, and Other Difficult Positions, by Lennard J. Davis, TPB, 2005,

pp. 11–32.

McRuer, Robert, and Anna Mollow. “Introduction.” Sex and Disability, Duke University Press,

2012.

Lizzie Wordham

            For my song, I was hesitant to sing from the point of view of someone who is disabled, as I am not and didn’t want to misrepresent. However, after our various readings I felt like I had somewhat of a grasp on some of the particular struggles and felt that I would be able to represent some of them. I think the main goal of my song was to display the disconnect between the able-bodied community and the disabled, as well as how a disabled person may want others to treat them. During class, one of the members of my small group shared that they tried not to hold certain things against able-bodied people, as they often don’t know how to act around disabled people. In this write up, I will pull out specific lines and verses and explain their meaning to me and how they relate to class material. I have put the lyrics at the end for reference.

            In the most recent book we’ve read for class, Autism, Murray writes that “In trying to explain or describe the experience of having autism, one of the most oft-repeated assertions is that it is like being an alien” (102). Although I was trying to portray a more general sense of disability rather than autism in particular, I feel that this does a good job explaining how a disabled person may feel in regards to being different. In my first two stanzas (I am calling them stanzas as opposed to verses because I believe the song reads as more of a poem), I was trying to represent some internal dialogue that a disabled person may have in response to an able-bodied person’s reaction to them. Wondering what they might be thinking about them, what they should say, whether they should be offended or hurt by the reaction, etc. The Kenny Fries poem, “Excavation,” that we read earlier in the semester was some of my inspiration for this part as it is a person reflecting on their own disability and recalling what society has called them. The line in my song that reads “Is there something that you’re looking for” relates to a line from a Bartlett poem we read for class: “to be crippled means to have access to people’s fear of their own eroding.” The narrator is reading into what able-bodied people are trying to get out of looking at them.

            The third stanza was inspired by the in-class discussions that I mentioned earlier. I was showing a disabled person who is trying to recognize that others feel different and lonely, too, although in a way that is completely different than their experience. It is someone trying to be understanding of others despite the majority not understanding them.

            My ideas for the fourth stanza came from a few different places. Although I was emphasizing the disconnect between able-bodied and disabled communities, I also wanted to include the first two lines to show that although a disabled person may feel disabled around others who are unlike them, their disability is normal to them and all they know. The lines “Am I really that different? Is there something that’s missing?” are meant to demonstrate the familiarity a disabled person has with their own bodies, and not feeling like there is something about them that needs to change. There is a line in Sheila Black’s poem “What You Mourn” that addresses how she would have felt about her disabled body had her legs never been straightened. It reads “…I would have nested in it, made it my home.” Later in the poem she says about her disabled body, “I loved it as you love your own country.”

            The second half of this stanza refers to something we talked about in class—the exploitation of disabled people to “inspire” or “motivate” nondisabled people. I was trying to write that motivation doesn’t come from differentiating yourself from another person. Instead, it comes from the actions taken to be better. Instead of able-bodied people being motivated to do something with their lives because they saw a disabled person who did, they should take action to be accommodating to, understanding of, and educated about communities that are different than their own. This leads me to the next two lines of my song, “There could be some changes so I am not a stranger.” I wanted this to read as a sort of call-to-action towards able bodied people to take steps to understand the disabled community. The person singing my song is asking others to learn about them. All communities being educated on disability can increase familiarity and lessen the disconnect. That’s what could happen if, as Murray writes, “the alien and the human are not held apart but actually inform each other” (103).

            The final stanza has the most meaning to me personally. One of my and my college friends’ favorite things to do was stay up late and play the game Taboo. We liked to bake cakes, get groceries together, and listen to silly music. I included these things because, to the majority, they are considered “normal” things to do. However, I wanted to emphasize that “normal” or “typical” activities like these are not limited to only able-bodied people. I wanted to emphasize that the disabled community is not different in their enjoyment of simple things like games and music. I think this stanza was significant for the song to demonstrate the importance of recognizing both the differences of able-bodied and disabled communities along with the things that make us the same. The final line is the narrator of the song wanting others to recognize what they want from them: to make efforts to understand them and learn about their community.

Lyrics:

I don’t what I should say

When people turn and look my way

Is there something that you can’t ignore or something that you’re looking for 

It feels rude when you ignore me

But when you smile is it pity 

When you stare what are thinking 

if I feel mad then that seems petty but I do, I do

But I don’t know what I expect from you 

There are things that I can try 

When people stare or people smile 

Cause I know others feel alone 

But there are some who’ll never know 

Am I really that different 

Is there something that’s missing 

Cause 

Motivation inspiration they don’t come from separating me and you, oh you 

Those things will come from what you do 

But there could be some changes

So I am not a stranger

Cause there’s birthdays and making cakes and movies nights and grocery dates and music we should probably hate and finding things to celebrate and sometimes staying up too late and playing games like taboo 

And those are things that I expect from you