61. Introduction: Misability
With our similar brain fog issues, Sara and I overflow with accidental portmanteaus. Misability was one such mashup, tongues tripping over disability into a new, preferable rasa. Collins (2000) articulates the struggle of Black women intellectuals in the U.S. to shed the distinctly American controlling images of an overall ideology of domination that positions white superiority as a social fact and Black folks as Other. A fundamental tenet of Black feminist thought is the importance of voice, and one of the goals of this interpretive work is self-definition, "the power to name one's own reality" (p. 300). In describing this interpretive framework, Collins examines the interdependence of everyday knowledge and specialized knowledge that clarifies the situated, subjugated, and resistive standpoint of and for Black women in the U.S. as well as the social conditions that engender and shape them. Similarly, hooks (1989) says, "As subjects, people have the right to define their own reality, establish their own identities, name their history. As objects, one's reality is defined by others, one's identity created by others, one's history named only in ways that define one's relationship to those who are subject" (p. 42).
Within the field of disability studies, the notion of disability has been variously conceptualized across the pathologizing language of medical categories and the social and linguistic conventions that structure perceptions and responses to the range of human variations thought to be disabilities in Western countries. Collective nouns like handicapped or crippled emerged and evolved over time as panoptic tools of regimentation, arranging disparate people into biopolitical categories according to physiological and psychological difference, in ways that are socially and economically convenient (Linton, 1998 pp. 8-10; Grech, 2015). Disability was taken up first by disability rights activists, followed by policy makers and clinicians, leading to debates over "what it is that unites disabled people and whether disabled people should have control over the naming of their experience" (Linton, 1998, p. 10). Medically, disability refers to a clinically significant, usually permanent deviation from normalcy. Legally, it is an incapacitating, disqualifying condition, a loss of function and earning potential. Socially, it is a stigmatized identity, a marginalized status assigned by the court of public opinion.
In the 1970s, the disabled community gained more control over self-definition, replacing terms like handicapped with people-first language — i.e., persons with disabilities — to decenter disability as an individual's defining characteristic. This was followed by a shift in the 1990s to disability-first language — i.e., disabled people — to call attention to the stigma rather than maintain it as a secondary characteristic. Nondisabled is often preferable to able-bodied as an additional means of centering disability (Linton, 1998, pp. 12-13). This self-definitional move is often met with popular resistance from nondisabled people and caregivers, who seek to center capability with terms that are often patronizing or infantilizing, like differently abled or handicapable. All these definitions depend on absolute categories like normal and abnormal, which in turn rely on their opposition to maintain their meanings (Davis, 1995; Linton, 1998). McRuer (2006) calls the cultural understanding of disability as deficiency compulsory able-bodiedness, drawing on the notion of compulsory heterosexuality in queer feminist theory, suggesting that the condition of normalcy — able-bodymindedness — is an institutional compulsion (p. 92). However, it's important to note that able-bodymindedness is not a fixed, coherent category. Various nondisabled identities are socially stigmatized as deficient: for instance, fat bodies, sedentary bodies, non-reproductive bodies, gender-fluid bodies, or recreationally modified bodies.
Disability studies scholars, disability rights activists, and many members of the disability community at large have been critical of this binary and the medicalized classifications that become legitimized by society's agreement that disability requires cure. Disability justice movements seek to reinterpret disability as a social, political, and aesthetic category and reclaim it as a collective name that designates a common social and political experience. Linton (1998) notes that the disabled community, disability studies scholars, and disability rights activists have chosen to reassign meaning to a preexisting word rather than select a new name. She suggests that retaining disability risks preserving damaging medicalized connotations and that we must name the political category to which disability belongs: categories like gender, race and ethnicity, and sexuality, for instance (p. 31).
It could be argued that these categories are also biopolitical tools of disciplinary regulation, just as it could be argued that people regularly invent new names for their identities and affiliations intended for personal use. Crip might be a collective name that departs from dis- (Kafer, 2013), but it is a linguistic resignification that remains stigmatizing, and thus belongs to the same political category.
Linton (1998) reflects on the prefix dis- as a sundering, separation, or undoing, such that disability is "the repudiation of ability" (p. 30), performing the schism between nondisabled and disabled people in society. Dis- words are often an imposition on me from others, but mis- words introduce the possibility that others err — as in misinterpret, misunderstand, misdiagnose, mistreat. As prefixes, mis- and dis- both mean "not" or "opposite," but mis- connotes wrongness and inaccuracy or a suspicious manner. There is a trickiness to mis- that dis- does not encompass: misfitting, being paavam or misfortunate, having missable viththiyaasam, undergoing the misactivation of latent infection leading to the pathogenesis of a post-viral illness, the tricky mischief of Loki or Krishna, whose lies disturb our webs of signification (Hyde, 2010, p. 72).
In Western biomedical models, disability is a dichotomy: healthy/sick. Misability is healthy/sick/both-and/neither-nor. Dynamic and cunning, it's the product of a thinking without method well-suited to fluid and fluctuating painful modes of perception modulated for gender and sexuality, race and ethnicity, locality, and academic and biomedical gazes (Deleuze, 1968/1994). Unlike the dis- of disability — which gives rise to other dis-'s that disabled folks are familiar with, like disorder, disbelief, discounting, dismissal — the mis- of misability is the contingency of eylum and eylaathu, words that make visible the entanglements between my ethnolinguistic and fibromyalgic identities.
Self-definition is a compelling framework for the reclamation and generation of specialized knowledge belonging to painervated nonwhite subjects from the Global South, who exist under intersecting oppressions, objectified in spaces that remain resistant to our reality as we tell it. This name (and its capacious categories) rejects the binary thinking that characterizes Eurocentric biomedical and social names for disability; it integrates the ambiguity that is fundamental to the affective life of Tamils and our personhood. Obliqueness, indirection, and intentional ambiguity are an integrated part of Tamil culture. Enactments of self, like metaphors and parables that free (rather than fix) interpretive possibilities, become vessels of personally, relationally meaningful messages. An Eelam Tamil aesthetics of experience privileges expressions with a capacity to contain multiplicity, facilitating fluidity and ambiguity (Desjarlais, 1992; Daniel, 1984; Appuhamilage, 2017).
Grech (2015) notes that disability studies disengages from the colonial, much like postcolonial studies eschews disability in most of its content. Disability in the Global South and its diasporas is particularly neglected and underrepresented in the literature. He observes: "Colonialism reframed and repositioned disability as a condition replete with signifiers and messages around notions of ideal colonised bodies built around a consciousness of the body, framing the path for contemporary narratives of normativity, normalcy or ableism, sustaining the devaluation of disabled bodies in the broader metanarrative of 'compulsory able-bodiedness'" (p. 10). Despite the high incidence of debility and disease caused by ethnic conflict, scarcity, and , the Tamil language never developed a word for disability. The closest approximation might be viththiyaasam, a word that means difference without belittling difference (Canagarajah, 2022, pp. 1-2). In addition to viththiyaasam, Amma and Appa used words signaling dynamic capacity, like eylum or eylaathu, can or can't, which refer to ordinary, acceptable fluctuations in ability. Taken together, these words suggest that dynamic deviation is the norm and that community and care work is necessary for mutual well-being (Piepzna-Samarasinha, 2018; Canagarajah, 2022).
However, colonial creation and regimentation of disabled and punitively maimed bodies destroyed traditional networks of care and medicine, visibilized the consequences of being a (politically) unruly body, and reinterpreted helpless bodies as incorrigibly uncivilized (Grech, 2015, pp. 10-12). In my Tamil veedu and English schools in the U.S., I was socialized into both Tamil and American identities and knowledges about embodiment, sensory perception, and disability. But since Western biomedicine unambiguously, dualistically categorizes bodies as diseased or well, I can't explain how I'm chronically ill in the Tamil way: accepting my bodymind as an infra-ordinary viththiyaasam, as unremarkable and useful as Karna's skin, comprehending my flare-ups as an infra-ordinary pendulum's swing between eylaathu and eylum.
I'm not fluent in my mother tongue, but I can't use the little Tamil I know anyway. Since 9/11 especially, my American English accent has helped protect me from racial bias. But I think my quality of life would improve if I could describe my highly individualized conditions in ways that make cultural sense to me. If my physicians and I could enact a relational ethics of care and collaboration in working to understand my expressions together.
"Pain's terms are my terms, after all. Disavowing them or imposing someone else's terms upon them was, unsurprisingly, that much more painful" (Lau, 2020, para. 4).
The name of disability becomes, as for so many, my focus of explicit identification and contestation. Publicly, I call myself disabled; disability is an identity category that is materially necessary to qualify for the institutional and political mechanisms set in place for the disabled, a name that may also serve as a recuperation of disability via a reclamation of stigma by disabled individuals who willfully identify as such. Disability memoirs and scholarship express similar sentiments. Disabled communities that occupy a position where intersecting oppressions converge have developed interpretations of oppression by producing and validating alternative knowledges from their experience. Self-defining names have emerged, like "gimp" (Orlando, 2012) or the more mainstream "crip" (McRuer, 2006; Patsavas, 2014; Kafer, 2013), which figures in theories of cripistemology, crip time, and hashtag activism like #CripTheVote. But neither of these, as names, gets at the ambiguity inherent to non-apparent chronic pain or Tamil personhood, viththiyaasam or otherwise.
If there is anything unique about my conflictedness in calling myself disabled (outside of clinics where such a name is needed for treatment), it's that neither of my parents knew a Tamil equivalent. They argued it was self-deprecatory to call myself disabled. To them, the intermittent apparency of fibromyalgia was the same eylum or eylaathu that they, nondisabled themselves, uttered routinely. I was viththiyaasam. I wasn't inferior to anyone.
I'm also Americanized, with English-speaking social, professional, and medical networks, and without the necessary patience to constantly explain Tamil nuances. But I compromised with them: I went from calling myself disabled to temporarily abled, intermittently abled, abled-while-disabled, environmentally-disabled, and finally misabled, which I explained as a spectrum of viththiyaasam, trickiness, and dynamic capacity. It offered them a modicum of comfort: they could keep believing in the apparition of their high-achieving daughter; they could laugh at the darkly comic slip-of-the-tongue word-blend that matched our usual gallows humor; and, importantly for me, they stopped responding to me with aiyo, paavam and began to reasonably communicate about my conditions.
Normalcy and ability are not consistent, fixed concepts but possess infinite variance. Anomaly is the infra-ordinary condition of life. Ability includes anomalous characteristics that are temporary, like acute pain, insomnia, dizziness, heart palpitations, intestinal cramps. By contrast, disability as a concept doesn't subsume nondisabled characteristics. Accepting myself under this English name meant privately configuring my selfhood as subtractive and colonized, when disability is a far cry from my biocultural conception of pain or my embodied experience of it.
Misability is the name I'm giving to the set of orientations, skills, and everyday and specialized knowledge born of this standpoint and erased in biomedical diagnoses of disability, which is oriented around external systems of classificatory naming and visibilizing technologies that look for lack and deficiency, such that fluid, valuable ways of being are missed.
Every choice, including and especially submitting to a name, is an epistemological one. Concepts about passing, like disability masquerade or misfitting (Siebers, 2004; Garland-Thomson, 2011), express Western ideas of passing, where the individual presents as one or the other, disabled/nondisabled, and inadequately conveys a Tamil aesthetics of experience or the becoming-anew of chronic pain. As Lau (2020) observes:
As with many BIPOC and queer writers, such rehearsals of our pain are seldom for us and in fact limit the horizons for how we collectively imagine pain and those who have relationships with it. While we might imagine futures without pain for those who have lived too long with it, we need to invest in more than just pain's validation (we are here, we are in pain) and subsequent containment (a hotline, a statement, a short-lived balm). (para. 4)If we desire conceptions of disablement that exceed the narrow sociocultural and biomedical expectations set out for us by the neoliberal state, non-apparently chronically ill patients like me must make them ourselves, reclaiming names and terminology, making art, keeping receipts, challenging and transforming the marginal space in society that we are given.
Misability is pain as a seri seri head-waggle: overtly expressive, cunningly evasive, its meaning sensible and perceptible only to the trained, practiced eye. It is an acknowledgment of the fact that, for chronically painervated people, pain and fatigue are apparitional qualities, an ever-present haunting that rejects exorcism, not the intermittently surfacing intensities that doctors and society hunt as proof. "Chronic pain does not require constant remaking of the world and of the self because it creates a new state of being: one becomes a person who lives with pain rather than a person or body in pain. The normative conception of pain as acute and temporary does not fully convey this" (Sheppard, 2018, p. 65). The normative (medicalized) conception of chronic pain, with its emphasis on visual cues and thus on intermittently surfacing intensities, also does not convey this.
Bowker and Starr (1999) and Davis (1995) observe that even efforts to promote inclusion are classificatory and bounding. Misability is no different. But it contains the reminder that "everyone's experiences are unique and, therefore, we must desist from framing some experiences as standard and some as anomalous" (Cedillo, 2018, para. 10), and in its fluidity and adaptability, misability is vastly accommodating.
The thing about the fluid they in all the they will kill you stories I grew up hearing is that it is capacious enough to include my physicians and my professors, too.
Part of living with chronic pain as a second-generation Eelam Tamil woman in the U.S. is that I must continually grapple with how I can exist, born and raised on interminable polyvalence, with no choice but to unambiguously cast myself as disabled for treatment purposes. I accepted this label, and with it the trappings of dichotomous Euro-Western thinking, to adopt the biomedical "sick role" well enough to receive clinical attention, but this meant privately configuring my selfhood as dis-, insufficient. It meant accepting a social and cultural definition of my new/ongoing subset of embodied experience as either/or. In this binary thinking, I am one-half, the wrong half, of the monolithic abled/disabled dichotomy that discourages the attribution of value to disabled folks. The standpoint I'm attempting to autoethnographically carve out reclaims and reconfigures this queer fibromyalgic Eelam Tamil woman's ways of doing and being, which colonialism overwrote with either/or binaries (disabled/nondisabled).
Misability also accommodates others who don't feel represented by social terminology like disability or crip. Disability as an identity is inherently colonial, informed by racialized matrices of power and eugenic ideology, and dominant disability discourses don't reflect Indigenous perspectives or the impact of cultural assimilation (Grech, 2015; Velarde, 2018). Disability is unintelligible to many Indigenous cultures in the Global South, contradicting traditional perspectives where disability is a social identity and bodily restriction matters less than the individual's contributions (broadly construed) to her family and community. "Indigenous traditional beliefs work to welcome individuals as people first, with a reluctance to identify them as different, impaired, 'deficient' or disabled" (Velarde, 2018, para. 6). Seemingly circumscribed, my Batticaloa Tamil formulation of misability, my eylum and eylaathu, are expansive and protean expressions, paralleling the bodily fluctuations described by Indigenous peoples in Australia, New Zealand, Mexico, and many African countries (Velarde, 2018).
Perhaps if popularized, a slippery self-definitional name that speaks to all this while resisting classificatory oversimplification can decolonize prevailing Euro-Western policy and legislation from which Indigenous concepts of disability are absent (Velarde, 2018). Lacking a fixed reference point, like queer before it, misability might become a site of collective contestation for diverse people from the Global South and its diasporas.
Where accepting labels like disability or crip may feel like bowing to ongoing processes of colonization for disabled people from the Global South, misability makes room for FMS as "a way of life that is not entirely unfortunate" (Borges, 1977/2000, p. 482) and for pained perception as an offshoot of maya. It seems counterintuitive to suggest that boring, sometimes debilitating pain is not entirely unfortunate. The world of chronic pain and fatigue is inconvenient, undefined, exhausting, saturated with the potential threat of injury and lingering pain. But from having to inhabit this body in order to inhabit the world, I have reawakened to old ways of knowing and being, to intelligence in extremities, fascia, and viscera. Radically removed from disability's inherent insufficiency, in the ways of fascia, in the ways that scholars describe metis, zhi, or upaya-kausalya, I have become cunning, kairotic, transformed and transforming; I have had to come to terms with a body that is viththiyaasam, never stable, always self-annihilating and becoming-anew; I have lived this different bodymind kinship as instructive, resistive, empowering. Disability-as-enabling vulnerability, Canagarajah (2022) calls it: "the shared understanding of 'a community of dependent frail bodies' in the Global South [that] motivates and facilitates enabling resources and practice" (p. 8), adapted to life in Global North diasporas.(– 106. Divine Panopticism)