In Search of Crip Time
From the Series: Europe in the Balance
We learned, early on from our time in England, that when you spoke with members of the National Health Service (NHS) you were going to hear “no” the first time, no matter what. In truth, this was not only our experience with the NHS, but with all kinds of bureaucrats. The first place we tried to set up an account told us that they could not accept proof of employment from my employer—Goldsmiths College, in New Cross—because it was in a different postal code from the bank, which was located in Camberwell Green. We also learned the solution to hearing “no” the first time was just come back and ask again. On a different occasion, my wife came prepared: She took a printout of official NHS policy with her to our local outpatient surgery center. When told that she could not receive health care there because she was foreign, she pulled out a description of her rights as the spouse of a someone with a work visa and was promptly granted a visit.
These interactions with healthcare delivery in the UK became more pernicious once our son was diagnosed with autism spectrum disorder. London is where my son was officially diagnosed, though we had long known that it was not “normal” that at age two he never spoke or responded when his name was called. It was also in England where both my wife and I had precarious employment as temporary workers on foreign visas. We became intimately familiar with the NHS, both as caregivers for someone with a registered impairment, as well as workers whose wages and benefits reflected broader shifts in austerity planning on the part of the conservative government of David Cameron. During these years (2008–2012), my life as caregiver and as a left-leaning activist did not coincide. I did not reconcile the personal and the political of my existence. If anything, they were at odds more often than not. My son continued to get his services even as austerity measures were imposed, libraries closed, and student fees were raised—all things I marched against in protest. On the other hand, childcare responsibilities prevented me from being as involved in collective protesting efforts as I would have liked. A friend commented that people “are activists until they become parents,” neatly framing the conflict I felt between my personal and political self.
Looking back, I wish I had been more aware of the option of disability activism that Robert McRuer (2018) describes. I wish I had found a way to politicize my son’s condition other than by becoming entangled in the fraught identarian politics of “autism” or “aspie” existence (Bumiller 2008). If I had, I might have learned ways to involve my son, nonverbal and atypical though he was and is, in collective actions. By this I do not mean merely “including” him in projects that others organize, projects in which others’ voices would invariably have to stand in for his. Rather, I might have been inspired to do the harder work of actively shaping collective actions around things that he enjoys, like dancing, making music, and doing sports, rather than submitting him to the demands of others. Doing so, as Stacy Clifford Simplican (2015) argues in The Capacity Contract, would not only make public actions more spontaneous and interactive, but would also challenge the central ideology of compulsory able-bodiedness, which states that disabled lives are not worth living and should therefore be hidden, pitied, and ignored.
Yet, one of the reasons I did not think to make this step is precisely because neoliberal regimes do not only disable our bodies and support systems, but also our representations. In place of a more robust and radical cripping of neoliberalism, in the pre-Brexit UK McRuer writes about and I lived, we were offered what he calls an “austerity of representation” (McRuer 2018, 68). On the one hand, this means that hollow stories of “cripspiration” of impaired people overcoming impossible odds on their own as a “super crip” circulate globally. For a time, McRuer explains, this was embodied in the figure of para-olympian Oscar Pistorius, before he was convicted for murdering his girlfriend and the reality of domestic violence cripped, or destabilized, that image. On the other hand, in their actual lives, disabled persons are subjected to neoliberal double-speak: with people like my son simultaneously represented as those most in need of social support but also as those most likely to cheat the system. My family experienced the austerity of representation, for which we had no name, quite directly. Our son’s incontinence continued long after infancy, requiring the use of diapers throughout our time in England. We were therefore encouraged by well-meaning social workers to fill prescriptions for “nappies” from wholesalers; yet, to actually do this meant maneuvering an ever-shifting labyrinth of institutions and contacts that denied access to all but the most persistent and bureaucratically savvy. We fought, but often wondered: How many exhausted, defeated caregivers or dependent persons with impairments simply turn back after the first “no”?
This is the fate of more and more people under austerity regimes, not only the most vulnerable. We are rendered suspicious and incapable, as if solely responsible for our own circumstances, for student loan repayment, housing or credit card debt, medical emergencies, unemployment benefits, and the effects of limited job prospects. I argue that these are crip times for Europe, and the world, because of such austerity politics. If that is true, then, following McRuer (2018), it is necessary to identify the missed opportunities for engaging in cripped actions in response. This means looking for the transformative potential of the media we consume, from extraordinary fantasy fiction to everyday stories of resilience and resistance.1 I missed my chance to do so at the time I lived in England, but our world, our systems, our bodies are no less broken today.
In the United Kingdom (and much of the world) this year, the most popular film stars an alcoholic, overweight god with a prosthetic eye, a rich inventor whose heart condition (caused by a bomb he designed) inspired him to make the world’s greatest weapon, a scientist with multiple personality disorder and “anger issues,” an assassin who underwent a hysterectomy to make her an elite killer, and a man who was ideal for an experimental, super-soldier serum precisely because he was a weak and sickly, “little guy” who could not enlist. That only includes the primary Avengers in Endgame (2019); I did not even mention the paraplegic or one-armed soldiers, or the fact that all of the characters are essentially suffering from PTSD after watching half the universe die. Meanwhile, the most popular television show, Game of Thrones (2011–2019), included a scarred, little person advising a wheelchair-bound king, people with scarred faces and bodies, blindness, near-muteness (“Hodor!”), lost limbs, cured skin diseases, and latent madness. The mainstream popularity of disabled characters could be regarded as a commentary on broadly disabling or debilitating conditions of the contemporary moment we find ourselves in. “All hail, Bran the Broken!” characters on Game of Thrones proclaim in the finale, while commentators the world over increasingly describe Europe or the UK in the same way, as disabled and disabling, haunted by damaged institutions and a fragmented civil society.
Bumiller, Kristin. 2008. “Quirky Citizens: Autism, Gender, and Reimagining Disability.” Signs 33, no. 4: 967–91.
McRuer, Robert. 2018. Crip Times: Disability, Globalization and Resitance. New York: NYU Press.
Simplican, Stacy Clifford. 2015. The Capacity Contract: Intellectual Disability and the Question of Citizenship. Minneapolis: University of Minnesota Press.