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 Although Kafer acknowledges that this method is flawed and outdated, she does not go as far as the social model of disability, which states that disability is not a product of a medical condition, but rather social attitudes,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,
