Who’s afraid of chronic illness? Our society – but it doesn’t have to be

Kalpana Mohanty is a writer, PhD candidate and Trudeau Scholar at Harvard University who works on the history of disability, gender and empire in South Asia.

Canada now has one of its largest-ever populations of people with chronic illness and disability. That number is driven by an estimated 1.4 million Canadians who may have developed long COVID, the symptoms of which include loss of taste and smell, fatigue, difficulty breathing, heart issues and muscle aches.

There will be consequences to this, including a loss of jobs, a surge in chronic pain, and an increased reliance on a shrinking welfare system. But it also presents a crucial opportunity to re-evaluate how we approach and understand chronic illness as a society. Our discourse around the topic has stagnated such that it resembles the way we approach sexual assault: We believe it exists, but require overwhelming evidence to take it seriously, and even when we do, we are suspicious that people are faking it.

Conversations in the mainstream media are too often hijacked by the plight of wealthy, high-profile and, often, white people. And even reactions to those narratives tend to be critical or dismissive: In popular culture, we’ve seen prominent chronically ill people labelled as sufferers of Munchausen syndrome, a mental-health condition characterized by the belief in one’s illness when one is physically healthy. There are even Reddit pages dedicated to speculating on the veracity of public figures’ health conditions; targets have included Yolanda Hadid, of Real Housewives fame, and actress Jameela Jamil.

In movies and in TV too, there are far too many examples of villainous characters who use an eyepatch, or who use a mobility device, only to dramatically stand up at some point to demonstrate that they were faking it all along. This trope ignores that many wheelchair users can stand and walk, but sometimes need assistance. On the other hand, there are far too few examples of people with chronic conditions and disabilities simply living their lives.

Our overabundance of narratives about people faking disability take away from the real injustice: that too many people with chronic illness and disability are left woefully without care or reasonable accommodation. There is more collective outrage around the idea of faking chronic illness and disability than there is around how we actually treat afflicted people.

This media-fuelled suspicion of high-profile people with chronic illness creates a societal precedent that inevitably extends to non-celebrities, and makes able-bodied people feel entitled to become authorities on the validity and needs of other people’s disabilities or chronic conditions. Rather than question how we talk about chronic illness and disability, this attitude affirms the noxious myth that chronic illnesses, at their core, are fake.

This played out when able-bodied people gathered outside an accessible restroom to shame a man with ulcerative colitis for using a washroom meant for disabled people, as occurred in the British town of Darlington in 2018, and when an able-bodied woman accosted the writer Lindy Price, who has chronic pain, for using the disabled parking spot. Julia Buckley, who has an invisible medical condition, wrote in The Independent about the many times she has been accused of faking her disability when she books assistance or a wheelchair at airports. And more recently, The Wall Street Journal reported in October that young women were developing tics, quoting two teens who linked them to using the app TikTok, which touched off the belief that they were merely faking Tourette syndrome.

In my own life, I have witnessed confusion over my selective need to use mobility devices such as wheelchairs or mobility scooters and assistive technology such as speech-to-text or text-to-speech software, which is only heightened by my passing as an able-bodied person.

None of this, however, is particularly new. The tropes around faking chronic illness or faking disability are as old as our systems of welfare. These tap into people’s fears that people are “abusing the system” – predicated on the assumption that there is even a system to abuse. We saw the limits of that “system” during the COVID-19 pandemic: People with disabilities received a one-time payment of $600 from the Canadian government, while students, for example, received up to $5,000.

What has changed is that the pandemic ushered in another era of increased reliance on the government – and historically, such periods of crisis and change are typically followed by mass public scrutiny over the allocation of government resources.

After the second Industrial Revolution in the 1870s, worker productivity became seen as a virtue and, as a result, people with disabilities were viewed as lesser members of society. Sarah F. Rose, an associate professor of history at the University of Texas at Arlington, explains in her book No Right to Be Idle: The Invention of Disability, 1840s-1930 that the rise of a system by which individuals sold their labour for wages made it difficult for people to supplement the labour of family members with disabilities, who were not able to produce the same levels of output.

This was also the era in which sweeping public policies attempted to separate those deemed worthy from those unworthy of welfare access. Before Canada declared itself a dominion in 1867, Upper Canada diverged from Nova Scotia and New Brunswick by rejecting English Poor Laws, the pre-welfare-state system aimed at relieving poverty in England and Wales. In comparison to those laws’ distinction between the “impotent” and the “able” poor, Upper Canada’s approach was initially more religiously informed, drawing explicit connections between poverty and sinfulness, as the historian Russell C. Smandych wrote in The Manitoba Law Journal in 1995. For example, the Society for the Relief of Strangers in Distress, established in 1817 in Upper Canada, recommended that unless someone was “sick and destitute,” they should be required to work. Understandably, the state’s differentiation between the “worthy poor” – those who qualified for help because of disability, age or medical condition – versus the “unworthy poor” became a battleground.

Upper Canada’s laws also had the unintended consequence of heightening surveillance over disability. The arbiters of “worthy” or “morally blameworthy” designations were rarely people with disabilities themselves – as is largely still the case today.

And after the First World War, the creation of a system that sought to compensate injured former soldiers led to public skepticism over whether some veterans had self-inflicted wounds. This phenomenon was referred to as malingering, and was often widely debunked by military doctors.

To this day, many people simply do not understand the variety of ways in which people with chronic illnesses and disabilities – either mental or physical, or both – exist in the world. Disability, after all, is not a binary state. But this static understanding of disability emerged from good intentions: to create a more powerful counternarrative to the once-widespread logic of eugenics, which argues that disabled lives are broken and inferior. Even today, we see selective gene-editing technologies such as CRISPR celebrated for their potential to eradicate Down syndrome, and we’ve even seen evidence of the forced sterilization of people with disabilities, which was legal in Canada from the 1930s to the 1970s and disproportionately affected Indigenous people. With such a violent recent history, it is no wonder that the disability-rights movement leaned on a politically expedient and stable conception of disability. All successful political movements require some degree of enforced homogeneity to provide a united front, and the disability-rights movement was up against the almost-naturalized logic of eugenics: that certain people’s lives were more worth living than others.

Now, we are once again in a crisis. But maybe this time we can stand back and reconsider how we should progress from here.

A more thorough view of chronic illness and disability would acknowledge that the popular image of a person with a visible disability that does not fluctuate and is painless creates suspicion around chronic illnesses that may present in less consistent ways, such as bipolar disorder, chronic fatigue syndrome, endometriosis and hypermobility, among many others. While it was necessary for the disability-rights movement to counter an earlier era’s medical model of disability, which elevated so-called cures over accommodation – a distinction that might prove useful to us now, when dealing with the pandemic – we are now moving toward a more expansive definition of disability and accommodation. It has yet to permeate into the mainstream, but it should: As Ari Ne’eman forcefully wrote in The New York Times in 2021, when we broaden the category of disability to include people with chronic illness, we can discover “a tremendous opportunity to make disability rights relevant to an American public that already receives so much from it.”

The pandemic has made it even more apparent that chronic illness is something that any of us can find ourselves dealing with at any time. This doesn’t need to register as a threat; instead, it could be a radical and expansive way for able-bodied and neurotypical people to understand that they too have a vested interest in the treatment of people in their communities.