Below is the script for my presentation at the Trans/Feminist Philosophy: Pasts, Presents, Futures conference, scheduled to take place at the University of Guelph on August 14th.
Summary
We tend to think of ability and disability as two sides of a binary divide. People on one side of the divide are entitled to disability-specific resources while people on the other side are not. The existence of liminal disabilities – those that do not fit neatly into either category – ‘trouble’ this binary distinction. Autoimmune disorders and Long Covid are two such examples. As a chronically fatigued person, I find myself locked out of both medical resources and peer support. To address ‘the problem of liminality,’ I suggest that we deconstruct binary, rule-based definitions of disability and adopt a playful model of world-building inspired by Maria Lugones. This model better accommodates the diversity of disabilities that we find in the real world, and undercuts hierarchies and boundaries within government bureaucracies, the disability rights movement, and elsewhere. To accommodate this model, we must radically restructure the social safety net, replacing strict and binary eligibility criteria with a more accessible, democratic, and publicly owned network of universal basic services and universal basic income.
Definitions of Disability
We tend to think of ability and disability as two sides of a binary divide. People fall on one side or the other. Nondisabled people do not need or deserve disability services, accommodations, and other rights guaranteed by the Americans with Disabilities Act (ADA) and related legislation. These provisions are for ‘certifiably disabled’ people, and nondisabled people need not apply.
This places those of us with so-called ‘medically ambiguous’ disabilities in a difficult position. A medically ambiguous disability is one that is difficult to diagnose but affects a person’s daily functioning relative to their environment. Autoimmune disorders are a paradigmatic case. Chronic Fatigue Syndrome, which I have, is described by the Centers for Disease Control (CDC) as “a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities.”[1] But the CDC also notes that CFS is undiagnosed in an estimated 90% of cases; “there are no specific laboratory tests to diagnose CFS”; and the condition is poorly understood and “might not be taken seriously.” Furthermore, research shows that chronic fatigue “can vary from person to person” and “can fluctuate from one day to the next.” This resonates with my experience of having ‘good days’ and ‘bad days,’ as well as a revolving cycle of symptoms that are difficult to predict. The CDC adds that chronically fatigued people “may not look ill,” which means that some of us can ‘pass’ as able-bodied, or be mistaken as able-bodied. Because of this, some chronically fatigued people choose not to identify as disabled, since their disability is not transparent. As an invisibly disabled blogger for Feminist Current says, “I don’t identity as a disabled woman” because “I don’t experience overt person-to-person ableism in which others question my worth and capabilities because of a visible condition which cannot be hidden from the world.” All of these factors conspire to make it hard for medical professionals, and even some chronically fatigued people, to classify CFS.
The trouble is exacerbated by dominant definitions of disability that do not adequately encompass CFS. For instance, the American Social Security Administration (SSA) defines a disability as “a medically determinable impairment” that “significantly limits your ability to do basic work-related activities, such as lifting, standing, walking, sitting, or remembering, for at least 12 months.”[2] The SSA also specifies that “we will not find an individual disabled based on alleged symptoms alone,” although symptoms are the only evidence in many cases. Similarly, the CDC defines disability as an “impairment” that “restricts [participation] in normal daily activities, such as working, engaging in social and recreational activities, and obtaining health care and preventive services.”[3] These definitions converge on the notion of disability as a diagnosable medical condition that significantly limits daily functioning for an extended period.
Perhaps the social model can provide a better definition of disability…? While there are many variations of the social model, the earliest and still most popular version, authored by Michael Oliver in the 1980s,[4] defines disability as the disadvantage created by social barriers and ableist discrimination, while “impairment” refers to an individual characteristic that causes disfigurement, functional limitations, or pain and fatigue.[5] On this definition, CFS is a paradigmatic case of impairment, not disability. CFS, as such, is a target of medical treatment, not disability justice. Yet most chronically fatigued people can’t even get a diagnosis, let alone treatment.
While these are neither the only nor best definitions of disability, their institutional and discursive dominance give them power over disabled people’s lives. These definitions police the boundaries between disability and nondisability, determining who is eligible to claim membership in each category. Since CFS does not fit neatly into either category, the binary model is a problem for chronically fatigued people. On the medical model, CFS is too diagnostically ambiguous, intersubjectively variable, and subjectively fluid to be recognized as a disability deserving of institutional support. But on the social model, CFS is more aligned with ‘impairment’ than ‘disability,’ meaning that chronically fatigued people are not the proper target of disability justice and solidarity. Combined, these definitions cut chronically fatigued people off from any kind of communal support. We’re not impaired enough to deserve government assistance, but we’re not disabled enough to warrant inclusion in the disabled community.
Liminality as a Disability Critical Kind
Due to this liminal status, chronically fatigued people often feel ill at ease in both disabled and nondisabled ‘worlds.’ We cannot easily gain access to the benefits, accommodations, and legal protections afforded to unambiguously disabled people; we face distrust and skepticism when we claim to be disabled; yet many of us cannot work full-time jobs or smoothly navigate able-bodied spaces. Where do we belong? What community will accept our ambiguous body-minds?
The simple solution to this problem – which I will call ‘the problem of liminality’ – would be to expand the definition of disability to incorporate CFS. But this wouldn’t fully resolve the problem. For one, moving the goal posts won’t eliminate liminality; it would merely shift it onto someone else. As long as borders exist, there will always be borderline cases – people who face the problem of liminality, border-crossers who do not feel completely at home on either side. A better approach, I think, would be to accept that there simply is no clear-cut definition of disability – that the social construct of disability is always changing and subject to re-evaluation.
Second, even though liminality is a burden, it confers certain advantages. These include social, political, and epistemic privileges, such as access to critical consciousness, political virtues, and creativity. Perhaps the position of liminality can be leveraged to explore the limitations of the binary model, and to examine ways of restructuring society to overcome these limitations. This is what I plan to do for the remainder of this section, drawing on Robin Dembroff’s work as a guide.
In Beyond Binary: Genderqueer as a Gender Critical Kind, Dembroff defines “critical gender kinds” as “kinds whose members collectively destabilize one or more pieces of dominant gender ideology.”[6] The ‘dominant gender ideology’ defines gender as both binary and oppositional. Put simply, it says that men are from Mars, women are from Venus, and those are the only two planets. Although belonging to a gender critical kind can confer social disadvantages, the existence of gender critical kinds destabilizes the gender binary by underscoring its limitations. For one, the concept of gender critical kinds fills a “metaphysical gap” by providing “tools for understanding these new and quickly growing gender identifications.”[7] Second, it addresses “a hermeneutical injustice that arises from the failure to spread and charitably analyze the concepts and practices underlying nonbinary classifications.”[8] By recognizing the existence of gender critical kinds, we allow that binary gender excludes, silences, and alienates some people.
Similarly, one could see CFS as a ‘critical disability kind.’ CFS doesn’t fit neatly into the dominant definitions of impairment or disability, nor does it conform to the popular understanding of able-bondedness. Recognizing this liminal status could, perhaps, fill a metaphysical gap by providing tools for understanding a new and quickly growing disability identification, including autoimmune disorders like CFS and Long Covid, which have been increasing steadily since the start of the pandemic. It could also, perhaps, address an epistemic injustice that arises from the failure to give uptake to the testimony of luminally disabled people, including their ‘criptiques’[9] of the bureaucratic systems and theoretical constructs that see disability and non-disability as binary opposites. This testimony challenges the notion that there is a clear schema of disability.
There may be other advantages of disability critical kinds, including their ability to destabilize institutionalized dis/abilty binaries and engineer better models of disability justice and accessibility. Returning to Dembroff’s argument, they clarify that gender critical kinds destabilize the binary gender model across four axes: (1) the binary axis, which says that men and women are distinct kinds, (2) the biological axis, which says that gender is biological sex, (3) the teleological axis, which says that gender determines a person’s social, psychological, and physical features from birth, and (4) the hierarchical axis, which says that masculinity is more valuable than femininity, and that natural gender features are more valuable than unnatural or ‘artificial’ ones. Can critical disability kinds destabilize binary axes of disability in the same way?
I think that they can. First, critical disability kinds challenge the idea that disability and ability are distinct and oppositional categories, which can be identified and differentiated using a set of (medical or social) rules, criteria, or checklists. Liminality, by its very nature, defies the rules of binary logics. Second, critical disability kinds debunk the idea that disability is essentially a biological kind, an impairment rather than a social construct. Rather, even conditions defined as ‘impairments’ on the social model are clearly targets of ableist oppression. Third critical disability kinds destabilize the teleological axis because their characteristic features are too variable to be reduced to a list of biomarkers, symptoms, or definitive experiences. There are no necessary and sufficient conditions for CFS – at least, none that we know of that capture everyone’s experiences of CFS. Fourth, critical disability kinds challenge the hierarchical axis insofar as liminally disabled people routinely challenge hierarchies of ability over disability and of more and less valid disabilities. By the same token, they tend to advocate for better access to social support, recognition, and respect for people who rank low on biomedical hierarchies.
Across all four axes, then, critical disability kinds destabilize the binary definition of dis/ability, and illuminate the metaphysical, epistemic, social, and political limitations of that model. The existence of liminal disabilities calls into question the possibility of drawing a firm line between ability and disability without producing metaphysical confusion, epistemic injustice, and social oppression.
Playful Conceptual Engineering
The existence of disability critical kinds challenges the dis/ability binary and supports a more fluid and flexible understanding of disability. In fact, many contemporary disability theorists already think of disability in this way. For example, Elizabeth Barnes says that someone is disabled “just in case [they] have the kind of body the disability rights movement is promoting justice for.”[10] Since the disability rights movement is always changing, the definition of disability will change, too. But this might just push the question back a step: how can we decide who is a proper target of disability rights? Barnes recognizes that within the disability rights movement, there are debates about who is and is not disabled, and she thinks that there are ways of adjudicating these debates using implicit rules: “the disability rights movement doesn’t make judgements about what is and what isn’t a disability at random. Their judgements are rule-based”.[11] If we’re not sure whether someone is disabled, we can consult the implicit rulebook.
Now, one could argue that this definition of disability smuggles gatekeeping in the back door. Aren’t rigid rules, agonistic rules, serious rules, precisely what make binary definitions of disability so alienating? Don’t rules provide a way of ruling some people in and others out? Maria Lugones notes that when we play games, “there are rules that inspire hostility.”[12] Often, rules incite competition, antagonism, and hierarchies. They create barriers between winners and losers, insiders and outsiders. This is what we find in hostile worlds that make marginalized people feel “ill at ease.”[13] The rules are rigid and hierarchical. Lugones shares that, as a lesbian Argentine feminist, she often felt ill at ease in straight, “White/Anglo” spaces. These spaces have rules about how to speak, socialize, and play that are rooted in imperialism, sexism, and other systems of domination. In these worlds, Lugones felt like a “serious” and unplayful person. She felt that she was confined by stereotypes about her social identity. Imperialist worlds, and the rules that govern them, create “arrogant perception,” a way of seeing others in a self-serving and dismissive way.[14] Arrogant perception leads to epistemic injustice, alienation, and oppression. People who insist on ‘playing by the rules’ promote an attitude of arrogance.
The antidote to the rigid rules and arrogant perception of imperialist worlds is, for Lugones, playfulness. Playfulness is, in fact, the opposite of ‘ruliness’ and arrogance. When we are being playful, “we are not self-important, we are not fixed in particular constructions of ourselves, which is part of saying that we are open to self-construction.” My perception of myself today could change tomorrow. In addition, when we are playful, “we may not have rules, and when we do have rules, there are no rules that are to us sacred.”[15] Any rules we use should be understood as provisional and breakable. If the rules aren’t working, if the rules aren’t helping us, if the rules are creating divides and hierarchies, then get rid of them. Lugones adds, “we are not worried about competence. We are not wedded to a particular way of doing things.”[16] Maybe we can’t competently differentiate between different social categories – say, between disabled and nondisabled, or between masculine and feminine. That’s fine. We’ll figure things out as we go. Ultimately, being able to competently understand and follow the rules is less useful than being able to play with the rules, change the rules, and create a game that everyone can enjoy.
This is all to say that a playful approach to disability may be an improvement on a rule-based model that defines disability based on a set of rules that can be competently identified and enforced. Rather than rules, perhaps we can understand and shape disability through play. Lugones illustrates how this would work with an example of children playing with stones by a riverbank. They decide to crash stones against the bank, breaking them to expose the colours inside. Unlike chess or soccer, this game “has no rules, though it is certainly intentional activity,” and “both [players] understand what [they] are doing.”[17] The playful activity embodies “a particular metaphysical attitude that does not expect the world to be neatly packaged, ruly. Rules may fail to explain what we are doing.”[18] I suggest that this attitude fits with the recognition of critical disabilty kinds, which defy classification or definition within a binary, rule-governed system.
A playful approach to disability could help to resolve the problems caused by binary models, including the experiences of alienation and exclusion reported by many people with chronic fatigue. A playful attitude coheres with a more fluid and “polyphonic”[19] conception of disability.
Another advantage of the playful model of disability is that it provides a counterpoint to the imperialist, serious, and unplayful worlds of the Social Services Administration, the doctor’s office, the Disability Access Centers found at many educational institutions, and other worlds that are highly normative or ‘ruly,’ and that make many service-users feel ill at ease. A playful attitude challenges these worlds to become more hospitable, playful, and democratic. Lugones notes that world-travelling is often mandatory: “much of our travelling is done unwilfully to hostile White/Anglo worlds.”[20] Disabled people often have no choice but to cross into hostile spaces that were built by mostly-nondisabled bureaucrats. It would be helpful if these spaces were less ‘ruly’ and more open to playful reconstruction by the people who use them the most.
Notably, a playful model of disability is consistent with many non-Western, queer, and crip theories of identity. Gender theorist Rowan Bell, influenced by Thi Nguen’s and Maria Lugones, argues that “the nature of our agency in general is fluid” and “characterized by valuable disunities.”[21] Similarly, Imogen Sullivan, drawing from classical Doaism, argues that identity is best understood as a “transformational becoming” as opposed to “an essential being”; that “wandering free and unfettered” is a valuable way of life; and that “binary logics” place constraints on the projects of self-discovery and life satisfaction.[22] In a similar spirit, crip theorist Alison Kafer writes that “cripple, like queer, is fluid and ever-changing, claimed by those whom it did not originally define… This potential flexibility is precisely what excites me about crip theory, but… this inclusiveness is often more hope than reality.”[23] While disability is ever-changing, this fluidity is often absent in theoretical accounts of disability, including by prominent crip theorists.
The notion that disability can be understood through playful, unruly solidarity complements the anti-essentialist and non-binary accounts of identity found in many non-mainstream discourses.
Universal Access
The playful approach to disability raises questions about how the governmental bureaucracy of disability services would work. How would governments ensure that disabled people have access to the services they need and deserve if the concept of disability is a moving target?
While this question is beyond the scope of this presentation, I will simply say that a more democratic and comprehensive approach would be needed. As a starting point, we can look to models of universal basic services and universal basic income that aim to increase democratic community ownership of basic services like healthcare, education, housing, legal services, and transportation, while also providing regular cash payments to offset the effects of social disadvantages like income inequality, job displacement, automation, and disablement. The BC Poverty Reduction Coalition[24] offers a blueprint for this type of model, proposing a basic services program that is comprehensive and interconnected; that engages communities in the development and distribution of basic services; and that would be accompanied by a robust social safety net that includes universal basic income (UBI), or regular, unconditional cash payments to every citizen, regardless of their income, employment status, or other factors.[25]
This blueprint would help to address the inaccessibility of social services by promoting democratic ownership of those services, increasing the scope of those services, and providing regular cash payments to all citizens, regardless of whether they match a theoretical schema of disability. People who are temporarily disabled, marginally disabled, becoming disabled, about to become disabled, or somewhere in between, would all have access to the income they need to navigate their changing circumstances. This income would be accompanied by a system of universal basic services that help to mitigate the broader societal impacts of structural ableism.
Ultimately, what we need is a more democratic, less hostile, more playful, and less rule-governed system of social services – one that recognizes that people’s circumstances are always changing, and that rigid lists of eligibility criteria misunderstand the nature of identity, politics, and life in general. These lists are metaphysically, epistemically, socially, and politically misguided. They should be replaced by a more playful and accessible system of social support.
[1] Centers for Disease Control (2022), “ME/CFS Basics.” Available at https://www.cdc.gov/me-cfs/about/index.html
[2] Social Security Administration (2018), “Providing Medical Evidence for Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) [Fact Sheet].” Available at https://www.ssa.gov/disability/professionals/documents /64 -063.pdf
[3] Centers for Disease Control (2024), “Disability and Health Overview.” Available at https://www.cdc.gov/ncbddd/disabilityandhealth/disability.html#:~:text=What%20is%20disability%3F,around%20them%20(participation%20restrictions).
[4] Oliver, M. (2013). The social model of disability: Thirty years on. Disability & society, 28(7), 1024-1026.
[5] Thomas, P., Gradwell, L., & Markham, N. (1997). Defining impairment within the social model of disability. Greater Manchester Coalition of Disabled People’s Magazine. Available at https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/thomas-pam-Defining-Impairment-within-the-Social-Model-of-Disability.pdf.
[6] Dembroff, R. (2020). Beyond binary: genderqueer as critical gender kind. philosophers Imprint, 20 (9): 1.
[7] bid., p. 2.
[8] Ibid.
[9] See Criptiques, ed. Caitlin Wood. Self-published, 2014.
[10] Barnes, E. (2016). The minority body: A theory of disability. Oxford University Press, p. 44.
[11] Ibid., p. 45.
[12] Lugones, M. (1987). Playfulness,“world”-travelling, and loving perception. Hypatia, 2(2), p. 15.
[13] Ibid., p. 12
[14] Ibid., p. 4
[15] Ibid., 16
[16] Ibid., p. 15
[17] Ibid., p. 16
[18] Ibid.
[19] See Medina, J. (2012). Hermeneutical injustice and polyphonic contextualism: Social silences and shared hermeneutical responsibilities. Social Epistemology, 26(2), 201-220.
[20] Ibid., p. 3
[21] Bell, R. (2023). Playful resistance: gender norms as games, unpubl. ms. (workshop).
[22] Sollivan, I. (2023). Zhuangzi and Contemporary Cisheteronormativity: A Critically Eclectic Approach to Trans and Queer Philosophy, unpubl. ms. (workshop)
[23] Kafer, A. (2013). Feminist, queer, crip. Indiana University Press.
[24] BC Poverty Reduction Coalition. “Universal Basic Services.” BC Poverty Reduction Coalition, https://www.bcpovertyreduction.ca/universal-basic-services. Accessed 12 Aug. 2024.
[25] Daigle, Benoit. “Guaranteed Livable Income for Disabled Canadians.” Submission to the Standing Committee on Finance, 44th Parliament, 1st Session, 14 Oct. 2022, https://www.ourcommons.ca/Content/Committee/441/FINA/Brief/BR12565385/br-external/DaigleBenoit-e.pdf. Accessed 12 Aug. 2024.
BIOPOLITICAL PHILOSOPHY 