Persons living with episodic disabilities who apply for long-term income assistance in Ontario, Canada are often denied eligibility because of the questionable legitimacy of their shifting medical conditions. Since there are no official categories for persons with episodic disabilities to fit in because they are not entirely well (and employable) nor entirely sick (and unemployable), they are judged as 'not disabled enough' within the existing parameters of assistance. Drawing on a series of longitudinal, semi-structured interviews with eight respondents in Toronto, all of whom applied for, but were denied, long-term assistance, we examine the tension between how episodic disabilities are embodied versus the manner in which 'disability status' is legislatively constructed. Implications reconsidering the logistics of fixed categories and strategies addressing the wider spectrum of the experience of disability for policy are addressed.
The authors wish to thank the Social Sciences and Humanities Research Council of Canada (SSHRC) for providing funding for this project.
Introduction
Bureaucracies and government programs typically require fixed categorization to determine eligibility for various benefits related to disability. Application forms, replete with boxes to be checked and blanks to be filled in, inscriptively characterize bodies crudely as either disability eligible, or not. For persons living with episodic disabilities who apply for long-term income assistance, this determination process is typically highly problematic. Institutional definitions of 'disability status' often conflict with the unique ways that disability is embodied in the everyday lives of individuals. Many experts argue that given the complex nature of disability, no one definition fits across all circumstances or is even desirable and achievable. While the Canadian government recognizes tensions in the ways disability has conceptually evolved beyond paradigms emphasizing bodily incapacity to an identification of the social environment as constructing and influencing the experience of disability (Canada, Office of Disability Issues, 2003), this awareness remains largely absent in practice at the provincial level. Consequently, persons whose disabilities do not conform to corporeal templates of government classification remain on the economic margins of society.
In 1995, the provincial election in Ontario saw the rise of a neo-liberal government that advocated radical welfare reform in Canada based on developments in the United States. Benefits were slashed, eligibility tightened, and a new, inaccessible delivery system was introduced. Although the provincial election of 2003 introduced a new government with an ostensibly 'softer,' more caring agenda, earlier welfare reforms, including the Ontario Disability Support Program (ODSP), the long-term disability income support program established in 1998, remain intact today (Lightman, Mitchell, & Herd, 2005). Under ODSP, those categorized as 'disabled' are offered modest income security along with exemption from work expectations and many other bureaucratic harassments.
This paper describes how persons living with episodic or fluctuating disabilities (Banks, 2003; Canadian Working Group, 2007; Vickers, 2001) frustrate statutory classification within the ODSP. The core problem lies in the complexity of the eligibility determination process (Fraser, Wilkey, & Frenschkowski, 2003; Mayson, Vander Plaats, & Wintermute, 2005). Since persons with episodic disabilities are neither always well nor always sick, as they move between periods of health and illness, they fit in no standardized categories as they attempt to qualify for benefits. They must continually defend the contested credibility of their volatile bodies and situations. Given that categorical status is an essential buffer against the deepest forms of poverty (Beatty, 2005), individuals who cycle in and out of the workforce because of fluctuations in health and who encounter challenges in getting and keeping work, 'fall through the cracks' of the social welfare system (Mayson et al., 2005; Driedger, 2003).
Two objectives inform our discussion. First, we attempt to extend understanding of the experience of episodic disabilities within the wider scope of the lived experience of disability. Second, this paper unsettles the orthodoxy of "either/or" constructions of bodies as able/disabled and healthy/ill in favor of contingent, fluid identifications that more effectively reflect the embodiment of persons living with episodic disabilities and their economic security needs.
Controversial Bodies
The controversy surrounding episodic disabilities within ODSP guidelines derives from the legacy of medical model discourse that sustains biologically driven representations of bodies as either able (and employable) or disabled (and unemployable) (Cohen et al., 2008; Moss, 2000). This characterization mirrors the segregation of the poor into 'deserving/ undeserving' categories associated with the Elizabethan Poor Laws, a set of principles about 'deservedness' for benefits that dates from the early 1600's in England and remains the basis of much social welfare policy today (Lightman, 2003). This adversative classification, endemic to current policy, fails to account for the diversity of bodily experience as well as for the structural factors that constitute disability such as the social, attitudinal, ideological, architectural, and environmental dimensions that are at the heart of social model theorizing and disability policy (Oliver, 1990; Thomas, 2007).
Notwithstanding the long debate polarizing impairment from disability, this enduring divide may be seen as experientially porous rather than theoretically static. Rather than counterpoising the physicality of the body from its social construction, we suggest that experiencing disability is the entanglement of multiple bio-psycho-social forces, circumstances, and contexts (Bury, 2000) in which the functional limitations of bodies become disabling because of broader social, attitudinal, and discursive relations (Imrie, 2004, p. 5).
Although there are no official statistics on people with episodic disabilities in Canada, one government report in November 2003 noted the numbers are increasing over time (Canadian Working Group, 2006). Episodic disabilities include (but are not limited to) conditions such as multiple sclerosis, chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, colitis, Crohn's disease, premenstrual syndrome, interstitial cystitis, endometriosis, migraine headaches, environmental sensitivities, lupus, epilepsy, asthma, osteoarthritis, diabetes, cystic fibrosis, heart disease, chronic pain syndromes, musculoskeletal conditions, Hepatitis C, cancer, HIV/AIDS, learning disorders, and psychiatric conditions (Banks, 2003; Canadian Working Group, 2006). Episodic disabilities have no cure nor follow the typical illness trajectory of warning signs, illness, recuperation, and full recovery. Given that signs do not always show up in obvious ways, some individuals may look 'perfectly fine' during exacerbating episodes and commonly evoke suspicion from others (Kimpson, 2000; Richardson, 2005; Stone, 2005; Vickers, 2001).
Theorizing episodic disabilities
Understanding episodic disabilities as a legitimate tier of the experience of disability necessitates theorizing unlikely identifications that question how we interpret bodies in society. One framework (Vick, 2007) integrates interpretive sociological theory and queer studies to illuminate alternate ways of conceptualizing bodies that do not neatly fit into 'strained subjectivities' (Brueggemann & Moddelmog, 2002) but instead calls forth interpretive relations to both the experiential and the social.
Living in-between
There is limited literature that theorizes the space(s) between illness and wellness. Yet this interstitial space is where many persons living with episodic disabilities dwell (Ironside, Scheckel, Wessels, Bailey, Powers, & Seeley, 2003). Khayatt (2002) asserts that living in-between reflects bodily boundaries and identities that are elastic, sometimes accommodating fused alliances and sometimes embodying incongruities. This way of positioning episodic disabilities does not reify flux or the complete dissolution of any one identity but highlights the constitutive permeability of moving back and forth between embodied states and identities. From this vantage point, individuals wander physically and discursively from category to category, floating in classificatory social space as neither completely able nor disabled, sick nor well (Jackson, 2005). Since people with episodic disabilities move between a sense of health and vibrancy and periods of distressing unwell-ness that neither persuasively legitimizes ability nor validates disability, such individuals 'fall out of culture' (Hilbert, 1984) because they challenge homogenized constructions of ability, disability, health, and illness. Delineating this ontological (de)stabilization, Jackson (2005) conveys: [These individuals]… threaten the logic of [classificatory] system[s] by straddling … boundaries … . [they] are neither properly well nor properly sick [which] puts them betwixt and between the statuses of sick and well (p. 345).
In their study of women living with the fluctuating nature of multiple sclerosis and rheumatoid arthritis, Moss and Dyck (2002) posit living in-between health and illness as neither a merging of opposites states of being nor an oscillation between polarities, but an inhabiting of permeable borders that are fused, fleeting, and held in tension. Paterson (2001) characterizes this fluid ontology within a shifting perspectives model in which a person experiences changes between illness-in-the-foreground and wellness-in-the-foreground as the illness experience and its personal and social context changes. For Sanders, Donovan and Dieppe (2002), this corporeal shifting reflects a pendular swing in which individuals co-exist as able and disabled to the degree that each is significant in their lives. Following these perspectives, we suggest that living with an episodic disability means embodying permutations of (un)wellness and (dis)ability depending on the body's physicality and situated-ness from day to day and sometimes moment to moment.
Fluid Bodies
The cutting-edge work of queer studies scholars complicates the ways we think about bodies that do not neatly fit into strained subjectivities (Brueggemann & Moddelmog, 2002). The term 'queer' is an umbrella expression that is not so much an embodied state or sexual orientation but rather a designation that twists any imagined correspondence between bodies, self-presentation, and self-identity (Scott-Dixon, 2006). Contextualizing episodic disability from the porthole of queer theorizing frees us from the grasp of pre-given, fixed identities, thereby undermining our fantasies of stable, enduring embodiments (Garland-Thomson, 2002). By elastically crossing material (biological) and experientially shifting boundaries, there are no cast-iron universals of bodies; instead, there are only fluctuating, contingent, fluid bodies and identities that continually contract and expand from one side of the binary (health/illness, ability/disability) to the other, or that resist a divisive embodiment altogether (Colligan, 2004; Scott-Dixon, 2006; McRuer, 2003; Price & Shildrick, 1998). In this sense, persons with episodic disabilities, like persons with mixed gender and sexual identities, exist in disarticulated ways outside of mainstream culture and their own distinct subcultures (Sandahl, 2003; Wilson, 2002). Such bodies-at-odds create discomfort because they possess the ability to live sometimes as healthy, sometimes ill, sometimes able, and sometimes disabled.
"Queering" or complicating an understanding of disability implies opening critical spaces of representation where multiple subjectivities or different versions of bodies and selves are the norm (Budgeon, 2003; McRuer, 2003; Scott-Dixon, 2006; Sherry, 2004). By entertaining a "shifting-core" of multiple selves (Fawcett, 2000) and attenuating cherished cultural beliefs that the body is the unchanging anchor of identity (Garland-Thomson, 2002), we come closer to what Tobin Siebers (2001) refers to as "a new realism of the body." Advocating multiple subjectivities rather than absolute contrasts, Mintz (2002) and Pinder (1996) aver that since disability is not a universal experience, we must open ourselves to rethinking it in alternate ways that resonate with its volatility across periods of calm and unrest. Articulating a fundamental challenge with rethinking this kind of "unsettled embodiment" (Vick, 2007), Wendell (2001) stresses, the "[un]healthy disabled," those whose disabilities fluctuate, do not fit most people's picture of disability as stably impairing and often experience their disabilities in discrediting ways. This latter point is crucial given that knowledge of how individuals experience episodic disabilities as a fluid embodiment remains far below our cultural and political radar.
Methods
This paper reports on a series of semi-structured qualitative interviews in Toronto, Ontario with eight individuals, all of whom have physical disabilities that are often invisible in their fluctuating subjectivity. Four participants have multiple episodic disabilities while the others have disabilities that include cardiac disease, Hepatitis C, lung cancer, and degenerative disk disease. They were part of a larger, longitudinal study between 2002 and 2007 containing a panel of social assistance recipients in that city, drawn from the Social Services master database of 80,000 claimants. While respondents are not statistically representative of the larger population of social assistance recipients in Toronto, the available literature implies that the experiences described are indicative of the challenges faced by many welfare and working poor individuals and families (Herd, Mitchell, & Lightman, 2005; Lightman, Mitchell, & Herd, 2005). The project received ethics approval from the University of Toronto's Office of Research Ethics. Each interview of approximately one hour was audio recorded and later transcribed. Participants received a small honorarium for participation, compensation for transportation, and where necessary, remuneration for childcare. Given the small number of participants with fluctuating disabilities, a "hands-on," modified thematic analysis (van Manen, 1997) was used to organize and interpret the interview data.
The participants include five men and three women who are all between 30 and 55 years of age. Four of the male participants are single and the three females are separated single parents. All lived in Toronto at the time of the interviews and received assistance through the provincial welfare-to-work program geared to individuals without disabilities. All had attempted to access the long-term disability program, ODSP, but failed to qualify. Pseudonyms are used throughout.
The voices of episodic disabilities
Stable definitions- fluxing bodies
Under section 4(1) of the ODSP Act, a person is defined as disabled and potentially eligible for benefits if three criteria are met: (1) An individual must demonstrate a "substantial" physical or mental impairment that is "continuous" or "recurrent" and expected to last one year or more; (2) the direct and cumulative effect of the impairment on the person's ability to attend to his/her personal care, functioning in the community, and functioning in the workplace results in "substantial" restriction in one or more of these activities; and, (3) a person with prescribed qualifications must verify the impairment, its anticipated duration, and the restriction of activities in daily living (Mayson et al., 2005, p. 2). While we recognize wider debate surrounding the conflation of the terms impairment and disability, we concentrate on how existing definitions conflict with the lived experience of episodic disabilities.
An inherent dilemma surrounding the credibility of episodic disabilities, particularly conditions ascribed as "milder weight" (such as circulatory disorders, chronic pain syndromes, degenerative disc disease, and immunological disorders) is that they are not usually judged by caseworkers and disability adjudicators to be sufficiently impairing to interfere with daily functioning and the ability to work (Shields, 2008). Many individuals whose bodies are medically suspect are designated the 'able-disabled,' (Titchkosky, 2007), closer to 'normal functioning' and expected to 'overcome' their shifting disabilities and work.
Despite alternating episodes of impairment, several respondents indicated that it is a constant struggle to be legitimized as variably (un)well for the purposes of securing assistance. Introducing this embodied politics, Tim, who lives with several shifting disabilities, indicates:
They sent back a letter that they disqualified me … under section 4(1)… . I went through more bloody tests, CAT scans, MRI, EMG, ECGs, blood tests … as far as they were concerned, I wasn't disabled.
For most types of disabilities, the existence and significance of the disability is inferred from an inability to function on a daily basis in the work place or elsewhere (Beatty, 2005, p. 5). Study respondents who applied for ODSP were all denied eligibility under section 4(1) because the vocabulary used to describe and interpret disability status counters the fluctuating subjectivities of participants. Descriptors such as "substantial" impairment, "restriction" in activities of daily living, "recurrent" duration, and "cumulative" effect and the manner in which this vocabulary is translated into discreditable features of disability status, invalidate individuals whose conditions physically, temporally, and circumstantially move between states of better to poorer health from day to day, week to week, and month to month.
The category "disability" itself obscures differences between individuals when used statically in policy. ODSP applicants are commonly perceived as sets of uniform medical diagnoses rather than as individuals whose embodiments demand more tolerant interpretations (Fraser et al., 2003). Many persons with episodic disabilities experience considerable physical, cognitive, and/or social limitations that interfere with activities of daily living (ADLs) such as personal care, community functioning, and/or employability. However, such restrictions either independently or in combination in any particular functional domain, may or may not reappear with the same symptoms, intensity, duration, or within the same contexts with each flare-up of a person's condition(s). Given this shifting materiality of the body, the magnitude of a person's disability and her/his functional restrictions become exceedingly problematic to corroborate as consistently substantial and stably recurrent. Stated differently, while an episodic disability may present extensive limitations to self-care, participation in the community, and/or maintaining employment across specific points in time within an individual's illness trajectory, the conditions are institutionally dismissed as unjustifiably disabling precisely because of their changing subjectivity. Gord, who has a heart condition and high blood pressure that are complicated by side effects from his medication, relays his wavering experience of disability this way:
I couldn't work because of … a heart condition … high blood pressure … other symptoms that come on which have been serious… The side effects of medications like dizziness, being tired all the time, lack of appetite. I just couldn't get out of bed… . There's peaks and valleys … People might look at me and say 'oh well, you're big and strong, you can certainly handle a lot of stuff.' It's not on the outside so much; it's on the inside you have to look at too. You may be ready, willing, and able but your body's telling you something else.
Gord's comments reveal the bodily experience of having an episodic disability as an unpredictable cycling between better and worse periods of health that periodically limits his feeling well enough to get out of bed, function on a daily basis, and maintain consistent employment. As Gord relays, the peaks and valleys of episodic disability are tied to the unpredictable nature of how an individual feels from day to day. One day may promise vigor and the body's cooperation in performing various tasks and the next day may present unrelenting fatigue, problematic side effects from medications that appear out of nowhere, and reduced energy levels. Specifically credited with the conception of good days and bad days that Gord equates with the ebb and flow of his episodic disability, Charmaz (1997) indicates:
Criteria for good and bad days shift as someone's condition improves or worsens. Good days become much better as health improves… .As illness progresses, this process works in reverse… Lesser bad days allow for more elastic definitions… [but] bad days become certain, expected, and predictable. Yet exactly when they will occur and where they will lead remain unpredictable (p. 53-55).
Unlike "traditional" or culturally familiar disabilities such as spinal cord injuries whose bodily materiality does not dramatically alter, episodic disabilities fluctuate between intervals of illness and wellness that force people out of the workforce without warning and then resolve again to allow people to return to work (Canadian Working Group, 2007). Alice, who lives with multiple disabilities including spinal stenosis, arthritis, diabetes, panic attacks, and asthma affirms how the fluctuating seriousness of her disabilities are institutionally challenged.
I have spinal stenosis … . I can't sit for long, I can't stand for long. The pain goes all the way down my leg. I'm diabetic… I have arthritis … anxiety attacks … [and] asthma. One day you can be really feeling well- like today's not too bad, but other days, you just can't get out of bed… Like you can go for a day or a week and be fine and then just one day, it's like "boom!" I applied for ODSP [and] they denied it so I'm appealing it… They just said it doesn't interfere with my everyday life.
A point of emphasis here is that having an episodic disability moves beyond having sets of good and bad days. Moss and Dyck (2002) imply that the shifting subjectivity of chronic conditions destabilizes scripts of health, illness, ability, disability, good days, and bad days that are tightly woven into the ableist fabric of society. Transcending a view in which individuals are either revitalized and able to live up to able-bodied expectations of appearance and performance on a good day or are worn-out, and incapable of meeting hetero-normative expectations of able bodies on a bad day merely resuscitates monolithic notions of embodied identity. Since health is bureaucratically defined, dichotomously, as the complete absence of illness (and illness, the complete absence of health), the reality of being healthy and chronically ill denies any experience of bodies that are habitually in flux. Consequently, the volatility of Gord and Alice's conditions combined with the changeable nature of what they can and cannot do each day remains subjectively and conceptually outside the parameters of what legitimately counts as a substantially restricting disability.
Arguing a related but different tack, Joe, who lives with musculoskeletal pain from a back condition, recounts how his vacillating periods of debility, although lifelong, are denied validity when resurfacing in variable ways depending on his physical health across time and the situation in which his disability is triggered.
My main problem is with my back … I do a lot of hard labor… Sometimes I can't move depending on what I did the day before so if I do any type of lifting, my back the next day, I'm cooked… . I decided to apply for disability … [but] I needed more proof.
The saliency of participants' comments evinces how fluctuations in the degree of disability can have life-altering repercussions in the moment, or shortly following physically taxing activities, as Joe articulates. Yet, despite the reality of these disabling episodes in participants' lives, they remain institutionally specious as valid ways of experiencing disability. While the able-bodied want recognition that they are "normal," Register (1999) reminds us that persons who fluctuate between states of health and illness want recognition that they are sometimes not. Accentuating the episodic nature of disability, Peters (1993) conveys:
Some disabilities fluctuate between … visible to invisible … or the reverse. The fluctuation may involve a change in the degree of disability (e.g. an individual's disability may go into remission with the disability becoming invisible), circumstances (e.g. an individual's disability may become less visible if they are sitting rather than standing) or environment (e.g. an individual's disability may become more visible in certain locations such as a recreation facility) (p. 26).
Beyond the shifting nature of episodically disabled bodies, Peters' description conveys how the experience of disability is as much about what happens inside bodies as it is about how societal conditions shape the experience of bodies in society. The official guide to disability determination for ODSP weights the substantiality of a person's disability in light of individual and cumulative effects of all medical conditions in addition to the influence of non-medical social factors such as age, education, and work experience (Shields, 2008). Yet, this kind of decision-making is rare for persons with episodic disabilities. Structural inequities including inaccessible work environments, onerous work tasks, inflexible work options, and attitudinal barriers that constitute the ways disability is constructed remain absent from the calculus. By excluding the cultural and social contexts in which persons with episodic disabilities are situated, many individuals are deceivingly categorized as "high functioning" upon ODSP application and are therefore, not considered genuinely disabled in order to receive benefits.
Looking (dis)abled
The subjective experience of physical effects such as fatigue, pain, dizziness, reduced stamina, and anxiety are under-recognized as seriously impairing in the lives of respondents (Davis, 2005; Moss & Dyck, 2002; Sveilich, 2005; Vickers, 2003). Sharing the invisibility of Gord's heart condition, Carol explains how her Hepatitis C does not make her look disabled in ways our society expects and therefore, how it is problematic to prove in relation to the ways disability is experientially understood and administratively inscribed in ODSP policy.
I have Hepatitis C… . which is a liver problem… .[but] you would think there's nothing wrong to look at me… I feel so run down at the end of the day because my immune system is weaker than the average person's…I can't constantly go, go, go like social services wants me to because my body isn't healthy… I tell [Social Services] this and they just do not get it because they figure I can still walk and I am able to go to work… They don't actually know what Hep C is. I had to explain it to them [but] … in their eyes they don't figure that I should be put on disability … but on the same token, they have to understand how it makes me feel physically… I am exhausted.
A key feature surrounding the institutionally disputed authenticity of episodic disabilities reflects an interpretive reliance on the visibility of the body as healthy/ill, able/disabled. As Montgomery explains: "[W]hen non-disabled people look at 'the disabled,' they see wheelchairs, picture-boards, helmets, hearing aids, and white canes … the tools we use. And these tools … equal disability" (2001, p.1).
Although disability carries "no particular look," as Stone suggests, our culture remains wedded to this visual discernment of bodies as exclusively able or disabled: "We are taught to believe that, by attending to visual and/or auditory cues, it is easy to tell who belongs in which category … The hegemony of dualistic thinking means there is an unproblematic divide between disabled/abled" (Stone, 2005, p. 294). Stone (1995) also argues that people have difficulty imagining that someone who appears able-bodied may nevertheless have disabilities, and commonly believe such disabilities are not "real." Such thinking, underpinned by false assumptions and negative cultural stereotypes of what disabled bodies ought to "look like" and "be like" denies individuals the right to define their own reality (Stone, 2007; Sturge-Jacobs, 2002). Similarly, Humphrey (2000) indicates that there is an invidious cultural skepticism and marginalization surrounding individuals with less tangible, fluctuating disabilities:
There are people who are coming to see themselves as disabled in spite of not being recognized as disabled in the official or traditional discourses … people who have journeyed from a disabled to a non-disabled identity and sometimes back again… . The right to self-define as disabled has as its logical corollary the duty to accept others' self-definitions, but suspicions that people are not who they claim to be circulate (Humphrey, 2000, 65-67).
Frank, who lives with multiple disabilities that alter in physical intensity, affirms this cultural skepticism and the repeated discrimination he experiences in being denied ODSP eligibility:
I don't know how I am going to feel day to day… I have multiple medical conditions- Hepatitis C, cirrhosis of the liver, degenerative discs in my upper and lower back, arthritis especially in my hands and elbows… I have two doctors saying I can't work but I can't get ODSP because of their criteria. I was refused twice before… . They didn't think my conditions, either on their own or altogether, were serious enough to stop me from working… . They still expect me to go out and work… . You have to basically be in a wheelchair.
Bill corroborates Frank's plight. Since his signs of disability are not readily visible, they become institutionally dubious in their absent presence:
I am a chemotherapy patient … with lung cancer… It's been a fight all the way, tooth and nail. My pulmonary breathing is not good and I've got an enlarged prostate … nerve damage … tingling in my arms and numbness. [My worker said] 'lots of people are dying of cancer and they are not on disability. There are lots of people who are worse off than you.' They treat me like it is nothing, like you got a cold… . You got to have no legs, no arms, no nothing … to get in, that's the way I see it.
Jung (2002) emphasizes that a visibly damaged or disordered body is perceived as incontrovertible proof of disability compared to the body of a chronically ill person who experiences disability in alternate, less noticeable ways. Alice, Frank, and Bill attest to the identification of disability beyond its medicalization to how it is informed by implicit ideals of physical appearance and performance associated with certain kinds of bodies. Since episodic disabilities transgress conventional images of disability, they remain beyond institutional representation.
Undoing categories
Although the dominant discourse argues that one must be either entirely able or disabled with no in-between (Stone, 1995, p. 418), living with an episodic disability situates individuals in two altering albeit co-existing worlds: the world of the healthy and the world of the ill. This embodiment is deemed experientially impossible within the realm of social and public policy.
Sara, who lives with episodes of severe back pain, challenges the calcified able/disabled taxonomy that continues to impede her qualifying for ODSP:
I have disc problems… I applied for disability… . Even though my doctor says I can't work right now for health reasons… . there is nothing where they can put you on temporary disability. You have to be either on (short-term assistance) one hundred percent or disability one hundred percent. I think, if a person has medical issues, say, in my case, but they didn't affect my daily life or my productivity one hundred percent but later on the situation got worse and … again changed… I don't think I should be in the same criteria as regular people on (assistance). If they start categorizing people, okay these kinds of people, this is why they can't work, these ones have medical issues whether temporary or long-term, figure out where they are. I'm sure there's other people like myself … so it doesn't seem like they recognize I should be in a different place.
Sara candidly conveys how the existing social assistance system discounts the complex reality of people whose bodies resist permanent constructions as neither fully able nor completely disabled but that shift between these distinguishable spaces (Moss & Dyck, 1999). Sara's position accentuates how clear-cut divisions between standard social assistance programs and disability-specific programs bolsters naturalized notions of ability and disability rather than considering the fluidity of bodies as they evolve along a continuum of changeable (in)capacities. While conceiving of bodies as fitting between the definitive spaces of health, illness, ability, and disability has not yet entered into political consciousness and disability policy, it is not beyond feasibility that positive change might occur.
Conceptual shifts
Our society has yet to embrace porous blueprints for bodies that fluster the material and discursive spaces of health, illness, ability, and disability and the governing ideologies that support them. Given that disability exists across a spectrum of bodies, experiences, and contexts, it defies precise description. Persons whose bodies resist prescriptive packaging as able or disabled are mired in no-win situations that are not easily addressed. In living as partially able and partially disabled as their bodies vacillate between intervals of wellness and illness, capacity and incapacity, persons with episodic disabilities are disqualified as the "rightfully disabled" within the definitional currency of ODSP policy.
Language, as part of the social construction of disability, shapes how we think about and identify disability. Ability and disability, while embodied subjectivities, are also constructs whose definition sustains myopic, naturalized categories of bodies, ultimately denying individuals access to life-sustaining income supports: "[T]he problem of disability is explained as if it resides in embodiment alone, and the social processes of interpretation that help to constitute disability as such are typically excluded from collective consideration" (Titchkosky, 2007, p. 134). In effect, it is not only the nature of bodily experience that — convincingly or unconvincingly — comes to the fore in disability policy for persons with episodic disabilities but it is how this subjectivity is given meaning as "disabling" or not that matters. The existing classification government officials apply to determine disability status is exclusionary because it evaluates some categories (like episodic disabilities) as "not disabling enough." Consequently, an individual must suffer in "definitional code" (Dumit, 2006) as a particular kind of body to be eligible for benefits. By maintaining this proscriptive reading, the lives of those most in need remain in jeopardy. Being attuned to how bodies inhabit different dimensions of (dis)ability, and being aware that such fluctuations can have life-altering repercussions, reframes the kinds of decisions we can make in relation to disability-targeted income policies. An interpretive scheme that forfeits rigid provisos based on select causes, finite prognoses, the substantiality of disability, and the significance of functional restrictions in favor of a pliant protocol that accounts for and anticipates the variation of human embodiment would offer a sound beginning in addressing the economic welfare of individuals with a diversity of disabilities.
A first step in facilitating this framework entails rethinking the nature and logistics of categories. While categories serve to organize meaning and structure decision-making, they also immobilize progressive thinking in relation to human bodies and the development of social policies. Rather than drawing a definitive line between persons as either able or disabled, employable or unemployable, there is a need to break free of culturally ingrained assumptions about (dis)abled bodies and advocate for an expanded awareness of disability as a complex, ever-evolving subjectivity. Concerning employment accommodations, Moss (2000) suggests that policies that recognize the instability of bodies require elastic, fluid boundaries rather than constricting, illusive norms. Within this milieu, income programs would support constructions of disability beyond the fixity of absolute categories as substantial or insubstantial, restricting or non-restricting, but as a shifting set of experiences and circumstances over an individual's life course.
The gulf between the lived experience of episodic disability and its legislative construal within ODSP guidelines is wide. Bodies that agitate binary organization remain politically unthinkable because in residing on the fluctuating borders of ability and disability, they do not properly fit within one category or another. Ultimately, attempts to unsettle intransigent categories paradoxically translates into persons with episodic disabilities being identified as "not disabled enough," an interpretive code used to disqualify some individuals from accessing vital income support. This situation raises key questions: How can the experience of episodic disability be recognized when its shifting materiality is politically questioned? Are ways of conceiving bodies as in-between and fluid, legitimate categories?
Though a full exploration of these questions is beyond the scope of this paper, we nevertheless suggest that any definition of disability status necessitates flexible characterizations within social assistance policies that redefine persons not in terms of seamless categories (able, disabled) but more porously as reflecting libratory subjectivities (Vick, 2007). Given that access to income security is a vital determinant of health, failure to eradicate the barriers posed by existing definitions and their implied ideological separation of real from unreal disabled bodies, will continue to sustain the economic hardship many persons with episodic disabilities confront. By conceiving and legitimating how episodic disabilities differ from other forms of disability, policymakers and program administrators can consider equitable arrangements where the inconceivable of disabled embodiment becomes the institutionally conceivable.
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