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Responding to Gut Issues: Insights from Disability Theory Jane Dryden
Mount Alison University [email protected]
Abstract: “Gut issues” refers to any condition that affects our digestive systems and causes pain or discomfort. The term points to the experience of our gut being an issue for us – interfering with our plans, undermining our bodily self-control, threatening our well-being. This paper aims to do three things: (1) introduce and justify a disability theory approach to gut issues; (2) use this lens to argue that the experience of gut issues has a social and relational dimension that could be otherwise, and (3) argue for a shared responsibility to ameliorate this dimension.
What are Gut Issues, & Why are They a Problem?
I use the term “gut issues” to refer to any condition that affects our digestive systems and that causes pain or discomfort. The term is chosen in order to point to the experience of our gut being an issue for us – interfering with our plans, undermining our bodily self-control, threatening our well-being. The Canadian Digestive Health Foundation lists nineteen different
“digestive conditions” on its website, including chronic illnesses, bacterial infections, and phenomena such as diarrhea and constipation (CDHF, n.d.). If we are interested in the experience of unruly guts, we can also include the effects of menstruation, conditions such as anxiety or migraines which often have gut-related effects, or the side effects of many medications.
Gut issues are often nonapparent; I cannot tell by looking at someone whether that person has Crohn’s, for instance – and they are often disruptive in an unpredictable way. This can affect one’s ability to carry out one’s plans in all sorts of ways, depending on context and severity. Gut issues can also create urgent needs: to sit or lie down, to find a bathroom, to go to a hospital.
Despite this effect, however, it is often perceived as awkward, improper, embarrassing, or rude to admit to them. Gut issues are a peculiar phenomenon.
This paper aims to do three things: (1) introduce and justify a disability theory approach to gut issues; (2) use this lens to argue that the experience of gut issues has a social and relational
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dimension that could be otherwise; and (3) argue for a shared responsibility to ameliorate this dimension. I also hope to encourage philosophers to interest themselves in philosophical reflection on the gut and also to make more use of work in disability theory in their reflections on health and wellness.
Relevant Shared Features of Gut Issues
There are three key features that gut issues may have in common which are relevant to this paper. Of course, “gut issues” includes a very wide range of conditions, and to put it bluntly, for some, the condition involved is something that can lead to hospitalization or the risk of death (e.g., Loftus, 2006, Sonnenberg, 2007). In discussing this range of conditions under a single term, I do not mean to undercut those differences. By focusing on the shared features, however, we can begin to identify avenues of collective response.
One of the most notable shared features of gut issues is their unpredictability. Many gut issues are episodic, which means that they involve fluctuations between periods of increased symptoms, or flare-ups, and periods of fewer symptoms. This can create difficulty in planning around them or planning ahead. Being unable to make definite plans can be intrinsically inconvenient, but it can also conflict with the expectations and demands of employers, instructors, and friends. For example, a student with ulcerative colitis may not know when a flare-up may occur, which may cause difficulties if that student’s professors require permission for extensions or make-up tests to be sought in advance of the due date. An employee with irritable bowel syndrome (IBS) may be late to a shift, or late coming back from a break, due to a flare-up of symptoms that requires a longer-than-usual bathroom trip. While it may be possible to request permission ahead of time to come in late or take a longer break, the unpredictable
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nature of gut issues makes it hard to plan to do so. There is a lot of misunderstanding of this kind of condition and it is often not accommodated.1
Not all gut issues are unpredictable in quite this way – celiac disease, for instance, or gut issues arising from various food intolerances, are predictable in the sense of regularly following from ingestion of certain foods. However, prior to diagnosis, the experience of the condition can seem unpredictable. Many people with food intolerances have stories of the trial and error involved in figuring out exactly which foods caused the problems. Further, even after diagnosis, people are still at perpetual risk of encountering problem foods in their daily lives – for people with celiac disease, this includes “being glutened” (e.g., Anderson, 2020) – and so may still experience a fair amount of unpredictability.2
The ability to make plans is a key part of agency (Bratman, 2000). Making plans involves the intention to follow through on them. However, the unpredictability common to gut issues poses challenges to this, sometimes minor but sometimes severe. It is worth seriously considering what we can do to help mitigate this, insofar as helping to promote and enable others’ agency is a good.
This leads to another relevant shared feature of gut issues: the ability to navigate them, and in some cases, their onset and severity, is affected by contingent environmental and social factors. The availability and timing of (safe) food is an obvious one, as is the availability and location of bathrooms. One’s sleep schedule can also affect one’s gut, and it is common for the symptoms of some gut issues to be worse in the morning (e.g., Hardy, 2018), which is an issue
1 This connects to beliefs and assumptions about disability generally, per this discussion of episodic disabilities, and the Ontario Disability Support Program points out: “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)”
(Lightman et al., 2009).
2 Here, the COVID-19 pandemic has shifted the nature of unpredictability. For those who are now working from home and not travelling, the unpredictability of encountering problem foods has decreased; however, safe foods might have been harder to acquire, particularly during early stages of the pandemic when grocery stores were out of stock of many items and delivery services were overloaded.
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for the timing of work shifts, school days, conferences, and so on. These involve social and environmental decisions that we make that could be otherwise, through ensuring greater public access to bathrooms, and allowing flexibility in hours or consideration of gut issues when scheduling (including the timing and appropriate length of breaks).
Structures of social inequality also affect the experience of gut issues. Amy Vidali describes the figure of “the gastrointestinal woman,” associated with hysteria and anxiety, and not to be taken seriously in making decisions about her own condition (Vidali, 2013); given this figure, it may be harder for women with gut issues to request help or accommodation. Cultural expectations about women not pooping or farting make gut issues perilous in both professional life and personal life (Bennett and McCall, 2019; Weinberg and Williams, 2005). Socioeconomic class plays a role in the types of accommodation possible at work; for instance, shift workers have significantly less leeway when it comes to bathroom breaks than salaried ones, and being able to work from home (and the type of job that allows this) can have a significant mitigating effect on the harms of gut issues. Racial inequality in health care access (e.g., Fiscella and Sanders, 2016) can also exacerbate the diagnosis, treatment, and management of gut issues, as can other sources of bias and inequality, such as anti-fat bias (e.g., Phelan et al., 2015) and anti- trans bias (e.g., Giblon and Bauer, 2017). The abjection and stigma associated with the gut works in combination with social inequality to create further harm.
While there are many things under our collective social control that can mitigate the effects of gut issues, they are often under the radar: we do not think to do them or to advocate for them collectively. This leads to the third common feature of gut issues, which is that they are hard to talk about. Gut issues carry a particular kind of stigma, making it difficult to ask for help or accommodation. This is experienced differently depending on the severity of the symptoms –
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for those with mild to moderate gut issues, the calculation of whether it is worth disclosing might lead some to suffer in silence; for those with more severe gut issues, disclosing might lead to being told “I’d rather die than live like that.”3 Cindy LaCom discusses the difficulty of talking about her Crohn’s symptoms:
Shit is filthy, and it represents contagion in ways that many physical and cognitive disabilities do not. I have found it relatively easy to negotiate symptoms of my MS publicly (even bladder incontinence); in fact, many are curious and will pursue conversations about the disease and its symptoms. But when people discover that I might shit my pants or pass gas through an open fistula on my buttocks as a consequence of my Crohn's, conversation stops cold and verbal constipation becomes the order of the day (LaCom, 2007).
These three features--unpredictability; connection to contingent social and environmental practices and expectations, and stigma/silence--make gut issues particularly difficult to grapple with. However, they also make it important to draw our ethical and philosophical attention to them publicly, in order to change collectively the context in which they are experienced.
Using a Disability Theory Lens on Gut Issues
Considering these three features also demonstrates that, while some of the problems associated with gut issues undeniably originate from the body, many are from the environment or involve an intertwining of biological and environmental factors. Disability theory is well- positioned to help make sense of this, as attention to the social and environmental factors in the constitution of disability is one of its core features.
This does not necessarily mean declaring that all gut issues are disabilities, or count as obvious cases of disability in all contexts. They may be – human rights law has recognized a
3 For example, in Shelley Tremain’s interview with Nancy Stanlick, Stanlick notes that “Two people have told me that they would rather be dead than have a colostomy. I didn't know how to respond to them” (Tremain 2015b).
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very wide range of medical conditions as disabilities for the purpose of anti-discrimination (Kilfoil n.d.). The Accessible Canada Act of 2019 (ACA) defines disability as:
any impairment, including a physical, mental, intellectual, cognitive, learning, communication or sensory impairment — or a functional limitation — whether permanent, temporary or episodic in nature, or evident or not, that, in interaction with a barrier, hinders a person’s full and equal participation in society (SC 2019, c. 10, 2).
Rather than making the case that (all) gut issues count as disabilities, which opens up a range of definitional questions that go beyond the scope of this paper, I argue that a disability theory lens is useful in helping to draw our theoretical and ethical attention to features of our shared social world that make things harder for people with gut issues, or to changes that might make things easier. As such, the argument aligns with the spirit of the ACA in terms of ensuring the capacity for “full and equal participation in society,” without trying to make a legal or bureaucratic designation of each gut condition.
Disability theory, including philosophy of disability, draws our attention to social factors and highlights their contingency; as such it can be contrasted with work that focuses solely on individual health. Disability theorists and activists often refer to the “medical model of disability” in which disability is treated as an individual biomedical issue to be treated or cured, with the relevant expertise belonging to healthcare professionals rather than patients (Goodley, 2017, 7). Recent shifts toward considering patients as consumers position patients as having at least some knowledge and agency about their care, but this still occurs within a setting framed around an individual and that person’s treatment.
The focus on the individual as the site of the problem and of treatment is at work even when researchers consider broader issues such as quality of life and social and relational factors in people’s experiences. For example, Argyriou et al., writing about the effect of inflammatory
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bowel disease (IBD) on interpersonal relationships, state that “Friendship and sexuality can be both negatively affected in IBD with an accompanying negative impact on patients’ physical and psychosocial well-being ... Patient support groups could be of importance so as to reduce these limitations and improve patients’ functionality” (Argyriou et al., 2017, 8). While the researchers note a problem at the social level, there is no suggestion that there are social solutions beyond
“patient support groups.” There is no suggestion that better education and attitudes amongst people without IBD might have a role to play, despite the fact that the researchers note later that
“A plausible explanation of our findings is that the majority of our patients encountered problems because of barriers and attitudes from the world around them, emphasizing the importance of the environment in the assessment and interpretation of disability” (Argyriou et al., 2017, 9).
Disability theory, on the other hand, widens the scope of social, political, and theoretical relevance to include visions of social change. In order to fully consider the kind of response we might have to negative experiences faced by people with gut issues, we must think beyond the province of what health care professionals or patient groups might do. While there are differences between various models of disability, in general they recognize the importance of attending to the social and political circumstances that help constitute disability, that create barriers and possibilities, and that shape much of the day-to-day life of the condition.
The best-known alternative to the medical model and its focus on the individual is the social model. The term “social model” is sometimes used in a shorthand way for any model which acknowledges a role for social and environmental factors in the experience of disability.
However, in its origins in the U.K., it is much more specific. On this model, there is a distinction between impairment, understood as an anatomical, biological, sensory, or neurological
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difference, and disability, which is understood as “the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers” (DPI, cited by Goodley, 2017, 9). The aim of the social model is not to deny that disabled people may need medical care,4 but to focus attention on the social and political context and the removal of barriers.
Looked at through the lens of the social model, we would make a distinction between particular gastrointestinal effects and symptoms, and the social, political and relational context in which those effects and symptoms take place. For example, the lack of public bathrooms presents a barrier to those whose bathroom needs might be unpredictable or frequent; the lack of public bathrooms within public transit systems means that this can also present a barrier to accessing employment or other activities. A social environment in which admitting to gut issues is treated as shameful or embarrassing creates a barrier to requesting breaks or assistance when needed. According to the social model, we can argue that these contribute to the disabling of people with gut issues (regardless of whether the particular gut issue is classified as a “disability”
within a given administrative context).
The social model, however, may not be adequate on its own. For example, Elizabeth Barnes notes that, while its main distinction is between impairments and disabilities, exactly what counts as an impairment is unclear, and it is impossible to say what bodies with impairments have in common (Barnes, 2016, 25). She also worries about the social model’s claim that disability “just is” discrimination against those with impairments, and the implication that all of the bad effects of disability are the result of that discrimination (Barnes, 2016, 26-27).
4 Commenting on criticisms that the social model denies the significance of impairment, Mike Oliver clarified that he never intended the social model to be “an all-encompassing framework within which everything that happens to disabled people could be understood or explained” and that he has “never seen the social model as anything more than a tool to improve peoples’ lives” (Oliver 2013, 1024-5).
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While she has repeatedly argued against the claim that disability makes someone worse off (Barnes 2016, 54-118; Barnes, 2009; Barnes, 2014), she does want to ensure that our accounts of disability acknowledge that there can indeed be bad effects “which would persist in the absence of ableism” (Barnes 2016, 27), and that “social conditions aside, many physically disabled people sometimes struggle with their bodies” (Barnes, 2018, 1158).
On her account, disability is a difference that doesn’t necessarily make someone worse off but simply means they have a minority body (Barnes 2016, 78), and what counts as disability is developed through judgements of solidarity that come from the “shared experience, shared struggle, shared goals” of the disability rights movement (Barnes, 2016, 46).5 For Barnes, this account gives the kind of flexibility needed to recognize a range of different conditions, as well as the context and circumstances of the person (Barnes, 2016, 47-48).
One of the implications that Barnes draws from her model is the importance of disability pride, which she argues is not just important for how we feel about disability, but also helps to establish that disabled people are to be taken seriously in their understanding of disability, as a way of counter-acting the view of disability as tragedy. Disability pride serves as a refutation of that view (Barnes, 2016, 168-186). For people with gut issues, Barnes’ account allows for the acknowledgement of unpleasant bodily effects while at the same time taking pride in having bodies that work differently (or taking pride in having learned to navigate having such bodies). It also encourages finding a connection to others in a collective sense of solidarity (Barnes, 2018,
5 Barnes’ account of disability omits discussion of “cognitive and psychological disability” (Barnes, 2016, 2-5). This is unfortunate given the prevalence of mental disability (using Margaret Price’s term for “a broad range of conditions that affect the mind” [Price, 2010, 118]) and because it risks reinscribing existing hierarchies of who is and is not taken seriously. Further, some gut issues involve a significant interrelation of physical and psychological symptoms. While I discuss Barnes’ view here as being useful in thinking through gut issues, I do not mean to endorse this omission.
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1159). It opens up the possibility of exploring what expertise people with gut issues might have in terms of resilience and coping with the unpredictable and unplanned.6
Other models of disability allow us to explore how the way in which disability operates changes substantially in different contexts. Dan Goodley identifies a “cultural model” of disability which understands disability and culture as informing each other, engaging substantially with historical detail and noting how the framing of disability (and impairment) is often dependent upon contingent historical and cultural circumstances. He notes that:
Cultural modelists have exposed the reliance of the normal body on the disabled body, the myth of the disabled/abnormal body - and its needed opposite the able-bodied/normal body. Incapable, often, of being able to define what we mean by a normal or able body, we are more adept at describing an abnormal body and situating ourselves as far as possible away from this anomaly. This turns the gaze on to normal society and considers how normative culture promulgates its own precarious position through demonising disabled people (Goodley, 2017, 15).
For example, David Mitchell and Sharon Snyder note how disability is used as a descriptor of bodies that are deemed expendable and undesirable. Racialized people are often read as having biological ‘defects’ and the history of eugenics demonstrates the way certain groups within society are despised and deemed ‘unfit’ (Mitchell and Snyder, 2003). More recently, they have invited an engagement with disability as providing “alternative values for living that do not simply reify reigning concepts of normalcy” (Mitchell, 2015, 5). Mitchell notes that, on the one hand, disability can engender “debilitating social beliefs born of anxieties about the radical vulnerability of embodiment (i.e., stigma, suffering, and impairment),” but on the other, it can also work “as a disruptive force of resistance in sedimented systems of privilege
6 Bê (2019) discusses the understandings and strategies developed by people with chronic illnesses; Pflug-Back (2019) discusses the ways in which disabled people have skills, knowledge, and practices that can prepare them particularly well for disasters; as one interviewee says, ‘We’re used to reaching out to each other and balancing needs. It’s messed up that we have so much experience with that, but it would probably be helpful in a survival situation – we’re struggling to survive all the time!’ ”
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accorded to normative bodies” (Mitchell, 2015, 7). Disability can invite us to think and act differently. He explores an alternative in which we foreground disability “as a site of creative dynamism” such that “bodies become more than inert corporealities (inactive matter) imprinted by cultural beliefs (Mitchell, 2015, 7). Disability activism, then, is not just a matter of fighting for inclusion into a pre-existing cultural world, but also a site for resistance and change to the culture itself.
This perspective is vital in thinking through our approach to gut issues. Per the social model on its own, we can attend to various barriers that people with gut issues may face. Per Barnes, we might note the importance of solidarity and disability pride. However, without addressing the cultural contexts in which gut issues are greeted with particular responses of disgust, it is hard to fully reckon with how we might bring about desired social change. As will be discussed below, making more cultural and social space for gut issues can help open up a broader politics that centers our embodied vulnerability.
Mitchell also criticizes the project of “‘add-on’ accommodations of a normatively exclusionary environment” insofar as it enables a privileged minority to integrate “at the expense of the further abjection of the many” (Mitchell, 2015, 44). Gut issues are often linked with abjection and a lack of dignity (LaCom, 2007). This association is risky given the rhetoric of
“dying with dignity” throughout discussions of medical assistance in dying (MAID). A Canadian study on the experiences of people who sought MAID found that “loss of independence and loss of function” were recurring themes in people’s reasons for choosing MAID, noting that “Many people had been strong willed and self-reliant before they became ill and struggled with being reliant on others, including family, for their basic needs and daily care” (Nuhn et al., 2018, e383). They quoted the spouse of one patient: “He doesn’t want to be incontinent. He doesn’t
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want people cleaning him up or waiting in the hopes that somebody finds him to clean him up .… He’s kind of a very dignified man, so he would find that a big struggle” (Nuhn et al., 2018, e383). The association of incontinence and requiring support from others with a lack of dignity is not something that can be solved merely with “add-on” accommodations, but requires a full shift in our thinking. We should ask what work the concept of dignity does in our society, and what experiences it deliberately or implicitly excludes.
For help examining the values, assumptions, and practices that shape our understanding of disability, we can turn to the work of Shelley Tremain, who uses Foucault’s practice of genealogy. For Tremain, disability is not an ahistorical, universal concept, or a naturalized biological property or attribute, but rather a Foucauldian dispositif or apparatus, “a thoroughly heterogeneous ensemble consisting of discourses, institutions, architectural forms, regulatory decisions, laws, administrative measures, scientific statements, [and] philosophical, moral and philanthropic propositions” (Tremain, 2015a, 8, n.2; citing Foucault. 1980, 194). The elements of this ensemble work together to shape commonly helped assumptions and norms, making them seem like obvious, naturalized facts, instead of contingent features. Noting how apparently common-sense ‘facts’ have contingently developed through history, medical, and administrative practice can provide impetus to resist them.
We can use this analysis to challenge the ways that gut issues are treated as individualized problems to be dealt with as unobtrusively as possible.7 The coming together of the built environment (including bathroom availability and quality), expectations of professionalism, individualism in health care, and culture discourse around what is considered shameful, all play a role. Gut issues are often treated as interruptions to the demands of
7 For an extreme example of this attitude in action, read the Ask a Manager advice column entry on dealing with a co- worker who on a hunt to track down “the Office Pooper,” and the discussion that follows, which includes practical discussions of bathroom air quality (Green, 2017).
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productivity for which the responsibility to overcome remains squarely on the individual. As Becker et al. note, “In a recent European study (25), 60% of IBD patients felt stressed about taking sick leave from work due to IBD, and 24% have experienced unfair comments about their performance at work from colleagues or superiors” (Becker et al., 2015, 82). They follow this with the note that increased awareness from the “general public and employers” on the impact of IBD would help address this “additional burden” on people with IBD.8 However, this dimension is not taken up in their overall discussions of results or conclusions, which remain focused on what patients most need to know in managing their condition. We do not have room here for a full analysis of the contingent and historical construction of gut issues as an often shameful issue of individual responsibility, but we can at least be attentive to what is taken for granted as
‘natural’.
Tremain also describes how our political consciousness regularly fails to pay attention to disability – for example, the way that disability is often left out of social justice priorities, and disability activism and history often passed over in public awareness.9 Tremain writes:
Ableist exceptionism is the term that I have coined to refer to the phenomenon whereby disability, because it is assumed to be a prediscursive, natural, and politically neutral characteristic (difference, attribute, or property), is uniquely excluded from the production and application of certain values, beliefs, principles, and actions that circulate in political consciousness (Tremain, 2017, 33).
This has two implications of relevance to my paper. One implication is the need for more theoretical and conceptual sophistication around discussions of disability in philosophy.
Discussions of the social and environmental dimensions of disability can risk getting derailed by
8 They also state that “To address the significant impact of IBD on relationships with friends and sexual partners, raising public awareness may increase the chance of patients being able to speak openly about the disease and to be met with more understanding” (80).
9 Titchkosky discusses this as well (Titchkosky, 2011, xi-xii). This pattern of absence has been especially apparent during the COVID-19 pandemic (Brown, Lunsky, Bell, Razak, and Verma, 2022).
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an insistence on the importance of taking heed of the negative aspects of the individualized, embodied physical experience of disability. Greater familiarity with the conceptual work of disability theorists and the priorities of disability activism would help avoid this derailing: we need not be trapped in an either/or of social or medical, or deny that the symptoms of gut issues can be unpleasant, painful, and sometimes life-threatening, in order to work for social change.
Rather than take for granted that gut issues just are a certain way, we can shift the context that shapes them.
The second implication is the failure to prioritize disability. Because it is assumed to be an individual problem, it is not perceived to be a political priority. This is also the case with gut issues. The suggestions that I will make in the final section of this paper follow from a basic consideration of what it would mean to take gut issues seriously and the recognition that many of the negative experiences and effects of gut issues are socially and environmentally contingent.
Responses to Contingent Social and Relational Aspects of Gut Issues
While research done by quality-of-life researchers can help draw our attention to particular experiences associated with gut issues that could be otherwise, it is limited by its use of an individualized conception of disability. This individualized conception puts the burden on people with gut issues to have to negotiate their surroundings on their own continually, while the unpredictability and stigmatized status of their conditions work against them. Disability theorists note that the paradigm that requires individuals to request individual accommodation “fails to understand accessibility as a collective or societal imperative for which nondisabled people are responsible” (Hamraie, 2016, 264).
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Critical work on accessibility argues that accessibility is a shared social project rooted in our interdependence (Valentine, 2020). Tanya Titchkosky describes it as “a questioning orientation, an important way to perceive, speak of, and take action on the relations between bodies and social space” (Titchkosky, 2011, x). Alice Wong writes, “Accessibility is more than just adherence to a law. It is an ethos that values different ways of being in the world” (Wong, 2018). Given the effects of ableism in creating barriers for people with gut issues, the responsibility for addressing those barriers should not lie solely with people with gut issues, or with gastroenterologists, or with Human Resources personnel. Rather, drawing on an ethos of valuing different ways of being, this ought to be a concern for the whole community.
Many Canadians have gut issues. Canada has one of the highest rates of IBD in the world (Kaplan et al., 2019, 1-3), and a high prevalence of IBS (Fedorak et al., 2012; Lovell, 2012).
Imagine if the prevalence of gut issues were politicized such that it led to a widely-shared demand for better access, more thoughtful planning around breaks and the structure of the workday, more public washrooms, and more acceptance of bodily vulnerability. Imagine if this demand was something we collectively took on, and was not merely considered an issue for individual consumers.
In arguing that it is important for Canadians to take gut issues seriously, I want to resist framing this issue as one of lost productivity, as for example Fedorak et al. do, in calculating the annual cost to an employer of sick days taken by people with IBS (2012, 254-5). Sometimes pragmatic decisions have to be made about how best to present an issue to those involved in political decision-making. However, this framing can reinforce the idea that people’s access to our shared social world is justified based on their economic contribution, rather than being an
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issue of justice and of human rights. I think it is worth imagining how things could be otherwise and reflecting on the kind of society we might want to live in.
The following suggestions are not for treatment options, which are specific to people’s particular medical situation, and do not encompass the whole of what is needed. Rather, they are ethical and political actions for us to assume individually and collectively, that would improve the social and environmental conditions for people with gut issues. They are not exhaustive and overlap somewhat. My intention here is to provide some recommendations that form part of a broader ethos and orientation, chipping away at the conception of gut issues as solely the biomedical concern of the individual, and creating resistance to ableist social norms.
1. Make a habit of taking the experiences and requests of people with gut issues seriously. Kidd and Carel note that the experiences of people with chronic illnesses can often be dismissed (2017, 184). Stereotypes of illness and disability often work in a binary in which someone can either be a professional or someone with an illness or disability, but not both (Waterfield et al., 2018, 332). Further, the stigmatized nature of gut issues can create a bind:
either someone is vague about their gut issues, and so might get accused of malingering (think of the expression “bellyaching”), or explicit, in which case they might be met with hostility or disgust.10 Rather, take people seriously when they describe what they need. At a broader level, signal willingness to listen, and to take proactive measures.
2. More specifically, take people’s food requirements seriously, including when they change. Often finding an appropriate diet can be a matter of trial and error, and some dietary interventions (such as the FODMAP diet [Monash University, 2019]) involve restriction and gradual reintroduction of foods, and so someone’s needs at one time may not be the same as
10 They might also be disbelieved altogether. The phrase “disability con,” coined by Ellen Samuels (2014, 28) describes a stereotype of fraud and fakery around disability; this stereotype negatively affects disabled people’s access to accommodation (Dorfman 2019).
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earlier times. This is not a sign of flakiness, but of navigating a complex embodied condition.
Asking someone what food is appropriate can take the burden off an individual who may be debating whether or not to bring it up.11 Similarly, have information about meal ingredients readily available.
3. Understand that timing can be an access issue. Take seriously people’s self-reporting around whether there are particular times of day that are better or worse for them. IBS, for instance, is often worse in the morning. Is it possible to allow an employee to come in later? Is it possible to have someone’s conference participation start later in the day? Scheduling regular breaks of a reasonable length can also help. Avoid making assumptions about people’s willingness to work through a break gamely, or to stay late in order to finish “just one more thing.”
4. One of the shared features of gut issues is their unpredictability. Where possible, build flexibility into timing, and communicate this flexibility. Since anxiety can worsen gut issues, worrying about others’ judgment can add to their effects. Consider ways of providing flexibility which do not require a frequent burden upon the individual requesting it; for example, is flexibility around hours or working from home something that can be included in a collective agreement?
5. Advocate at all levels for more public washrooms and for public washrooms adjacent to or in public transportation (in stations, etc.).12 This relates to broader issues around accessible and gender-neutral toilets (see e.g., Slater and Jones, 2018). Despite the fact that the availability of toilets is necessary to allow people to get around and leave their homes, they receive very little
11 For a more detailed discussion of the social and relational context to food requirements and food choices for people with gut issues, see Dryden, 2021; for a discussion of gut issues, epistemic injustice, and hospitality, see Dean, 2022.
12 See Lowe, 71-6 for a story about successful activism in support of bathroom access near a public transport hub in Ottawa.
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attention in political priority-setting (Lowe, 2018, 80-82). Lowe argues that this is partly because of a lack of attention, because individuals end up making do, or even blaming their individual bodies rather than the structural, systemic inadequacy (Lowe, 2018, 90). For many with gut issues, the absence of washrooms means not going out at all. Advocacy here is crucial for a broad range of people; as Leslie Kern argues, “ensuring the greatest possible bathroom access for all bodies across gender, ability, and class is a necessary step in creating a feminist city” (Kern, 2019, 111).13
6. Rethink how we talk about gut issues. For example, poop jokes are common and funny and often help break the ice in helpful ways that humanize our experiences and bring us together in shared recognition of our vulnerability.14 However, some jokes rely on the sense that to have a gut issue is to lack dignity or worth.15 Many gut-related events can be embarrassing; we might wish they hadn’t happened and we might feel flustered. If we accept human vulnerability and the widespread existence of gut issues, they need not be shameful, or perceived as significant moral or social breaches.16 Social media interventions such as the #ostomyinspo hashtag on Instagram can help in shifting perceptions of gut issues and their treatment.
These suggestions are aimed at shifting the experience of gut issues so that they can be less of an issue for people. Gut issues are structured by social and environmental factors that could be otherwise, and there are many ways to try to change them. Rethinking the way that we
13 This connects with a larger politics around urban access and design (e.g. Kern 2019, Salman 2018); recognizing its importance for enabling people with gut issues to move through the world can be one way toward building greater solidarity.
14 Examples of this can be found in the NPR Invisibilia podcast episode, “Poop Friends” (NPR 2021), and the Unladylike podcast episode, “How to Flush the Poop-triarchy” (Conger and Ervin 2019).
15 For example, the Brooklyn 99 episode, “Casecation,” features a woman (“Pam”) with a “twisted bowel” and an ostomy bag. Earlier in the episode, it is heavily implied that her bag smells (which should not be the case unless it is improperly fitted). Later on, when Jake is trying to prevent her from blowing up the hospital, she states that she would “rather be remembered as a woman who blew up a mobster to help her family rather than a librarian whose bowels are tied up like a sailor’s knot,” to which Jake responds, “Okay, that’s a very strong argument.” The humour of this joke relies on the agreed-upon shameworthiness of having a “twisted bowel.” (Brooklyn 99, 2019).
16 For drawing a distinction between shame and embarrassment, I thank the members of my writing group; I also drew on Crozier, 2014.
19
respond to gut issues involves challenging assumptions about the kind of lives that are compatible with dignity. It involves challenging habits and practices around the ability to conform to specific norms of productivity and scheduling. It involves resisting the kinds of remarks and attitudes that reinforce ableism and enforce silence. Desiree Valentine writes,
“Genuine access doesn’t just produce ‘access’ as a logistical achievement, it produces intimacy, transformative relationality, and ways of organizing society in a more liberatory fashion”
(Valentine, 2021). Gut issues are shared by many Canadians, and beginning to rethink the way that we respond to them can be a step toward a broader politics of shifting our assumptions about the way the world should be.
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