TW: discussion of mental illnesses, caregiver abuse

Anyone with the link can view/add comments https://docs.google.com/document/d/1PXPI5zy65FQsvXqHkEOFDp-oci3uW8bwntRyP4F5zcw/edit?usp=sharing

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.