Author: Kate Seltzer

In Emily Perl Kingsley’s 1987 essay “Welcome to Holland” – which has since been widely disseminated to new parents of children with disabilities – she describes her experience raising a child with disabilities as extensively planning for a trip to Italy, boarding the plane to Italy, and then being surprised and not a little disappointed when the pilot announces that instead they have landed in Holland. “So you must go out and buy new guide books,” Perl Kingsley writes. “And you must learn a whole new language. And you will meet a whole new group of people you would never have met… and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts” (Perl Kingsley, “Welcome to Holland”).

As a sibling of someone with autism, “Welcome to Holland” initially really resonated with me. Since discovering it, I have wrestled with whether the essay is a valuable contribution to disability studies or if it comes off as condescending and dismissive of what it means to be disabled. (The essay is undeniably centered around the able-bodied or able-minded parent’s perspective, which is its intent, and parts of it read sort of as describing disability as being “differently abled,” though it never uses that term.) However, after reading Alison Kafer’s introduction to her book Feminist, Queer, Crip and Jim Sinclair’s essay “Don’t Mourn for Us,” I am persuaded that “Welcome to Holland” has value, even if it is far from perfect. In addition to being two of my favorite pieces we read over the course of the semester, this paper will argue that Sinclair’s essay is an excellent practical application of Kafer’s “political/relational” model to autism.

To understand how “Don’t Mourn for Us” fits within  the framework of a political/ relational model, it is essential to understand what precisely Kafer is arguing. First, Kafer calls for, as many disability scholars before and since her writing have done, a movement away from the traditional medical model of disability. Under the medical model, disability should be approached solely through a clinical lens, and the goal is to treat the condition rather than mitigating the social circumstances that constrict disabled lives (Kafer 5). Although Kafer acknowledges that this method is flawed and outdated, she does not go as far as the social model of disability, which states that disability is not a product of a medical condition, but rather social attitudes, norms, and physical structures. “As much joy as I find in communities of disabled people, and as much as I value my experiences as a disabled person, I am not interested in becoming more disabled than I already am,” Kafer wrote. “Nor am I opposed to prenatal care and public health initiatives aimed at preventing illness and impairment, and futures in which the majority of people continue to lack access to such basic needs are not futures I want” (Kafer 4). With this understanding in mind, Kafer argues that “recognizing illness and disability as a part of what makes us human” is essential, while she avoids a complete rejection of the medical model.

 Under Kafer’s political/relational model, “the problem of disability is solved not through medical intervention or surgical normalization but through social change and political transformation” (Kafer 5).

Sinclair also indirectly advocates for an understanding of autism beyond the medical model. Autism, he says, is not an appendage; instead, it is inherently a part of the person. He discourages parents (and policymakers, etc.,) from seeking a cure: “Therefore, when parents say, I wish my child did not have autism, what they’re really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead,” Sinclair writes. “This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure” (Sinclair, “Don’t Mourn for Us”). Here, he makes the case that Kafer made, pertaining to disability generally, specifically to autism: autism is not a “problem” that should be treated through the medical lens. However, he argues that parents should be angry about the political and social conditions that make having autism more difficult than it otherwise should be: “Better than being sad about it, though, get mad about it – and then do something about it. The tragedy is not that we’re here, but that your world has no place for us to be” (Sinclair, “Don’t Mourn for Us”).

Part of what I love about both pieces is that they don’t pretend that having a disability is sunshine and rainbows all the time. Both Kafer and Sinclair allow for – and Perl Kingsley gets at – is the mourning for changed expectations. As part of her political/relational model, Kafer writes “I want to make room for people to acknowledge – even mourn – a change in form or function while also acknowledging that such changes cannot be understood apart from the context in which they occur” (Kafer 6). Kafer says that it is okay for disabled people to feel real loss as a direct result of their impairment, while acknowledging that the impairment is made much more difficult in daily life because of social and political norms that permit discrimination and inaccessibility. Sinclair also creates space for this period of mourning, saying that “much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives – but it has nothing to do with autism” (Sinclair, “Don’t Mourn for Us”). Again, Sinclair’s understanding of autism permits sadness as a result of shattered expectations, but like Kafer, he removes the burden of bearing that grief from the disabled person.

Kafer’s introduction to Feminist, Queer, Crip provides for an important framework within disability studies. The political/relational model strikes a solid middle ground between the outdated medical model and the social model, which too often fails to acknowledge some of the pain inherent in disability that goes beyond failing to meet societal expectations. Because Sinclair so eloquently rejects the medical model while asking parents to learn the language of autism and to work to improve a world hostile to people with autism, his essay fits solidly within that framework as a practical application of the political/relational model to autism specifically. Both writers allow disabled people and families of disabled people to mourn what they’ve lost without letting that grief consume them. As it turns out, “Welcome to Holland” may have been right after all.

I pledge – Kate Seltzer

Word count: 1102

Works Cited

Kafer, Alison. Feminist, Queer, Crip. “Introduction.” Indiana University Press, 2013. JSTOR,

  www.jstor.org/stable/j.ctt16gz79x. Accessed 28 Apr. 2020.

Perl Kingsley, Emily. “Welcome To Holland.” Emily Perl Kingsley, 1987, www.emilyperl

kingsley.com/welcome-to-holland.

Sincllair, Jim. “Don’t Mourn for Us.” ANI, Autism Network International Newsletter, 1993,

  www.autreat.com/dont_mourn.html.

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.

In this response, I want to talk about independence in Flannery O’Connor’s Good Country People. Hulga is portrayed as independent in her own right but also as reliant on the kindness of others. (Note: I think it is worth referring to Hulga by her chosen name, although she resents Mrs. Freeman for using it, viewing the act as an intrusion on her privacy.) I will analyze independence through the eyes of Mrs. Hopewell, the Bible salesman, and Hulga herself.

Much of Hulga’s perceived dependence (and inability to live on her own) is cast upon her by her mother, Mrs. Hopewell. Mrs. Hopewell routinely infantilizes Hulga, forgetting – or refusing to remember – that the latter is “thirty-two years old and highly educated.” Mrs. Hopewell takes Hulga’s bitterness at having to live at home as being evidence of this childishness; likewise, Hulga’s impressive accomplishment of receiving her PhD in philosophy is seen as both unbecoming of a woman (girl) and economically and socially inefficient, a “flaw” that frequently comes up in our discussion of disability studies and society’s negative perception towards disabled people. The narrator of Good Country People repeatedly reminds us of this infantilization by referring to Hulga, who is well into adulthood, as “the girl” throughout the story. Somewhat ironically, Mrs. Freeman seems to perceive Hulga’s abilities and personhood more than Mrs. Hopewell – however, Mrs. Freeman nonetheless views Hulga as an object of intrigue rather than her own person.

On the other hand, “Manley Pointer,” the Bible salesman, appears to view Hulga not in conjunction with her mother or as a child, but as someone whom he is attracted to. Of course, to the reader he appears guilty of disability porn, calling Hulga “brave” despite having no reason to believe that is the case. Of course, ultimately we learn this is all an act, and that he’s fully aware of Hulga’s strengths and weaknesses and exploits them to his advantage. From Hulga’s perspective, she is smarter than he is, but she is also intrigued by the prospect of romantic attraction – her first, as far as the reader knows. Pointer also goads her into climbing the ladder in the barn by calling into question her independence and physical abilities. She seeks to prove him wrong, and in doing so winds up in an extremely vulnerable position where Pointer is able to escape and to leave her trapped.

Hulga views herself as more scholarly and more insightful than anyone in her life – she seems to be right, but that fact goes unnoticed and unappreciated by everyone else. She resents that her physical disabilities have prevented her from moving away from her country home. In her day to day life, however, she’s perfectly confident and comfortable with her wooden leg and navigating her physical environment. At the end of the story, when Pointer reveals his con and steals her leg – seen here not as a mobility assist but as part of her, much like how some disabled people view their wheelchairs as an extension of their physical body – I worry for how her life will be after the incident. When Pointer removes the leg, she realizes she feels totally dependent on him without it, and she’s right. She’s functionally under his control. I worry that that experience will shape how she views her own self and her ability to survive independently.

Word count: 564

I pledge