When I was nine years old, I got the part of a dance fitness class student in my school’s choir concert. I was over the moon.  Two weeks into practice, the choreographer changed my part to a couch potato because I had juvenile idiopathic arthritis, and they were concerned about my joints. During the performance, I sat on the edge of the stage in a beanbag, reciting “I feel like such a slob,” and was allowed to join the routine—the couch potato’s saving grace!—after the jumping was over.

As a child with juvenile idiopathic arthritis, this was not the first time an activity was modified for me, but this time I was humiliated. The change in my role was fuelled, in part, by the narrative that chronically ill people are fragile. The change in my role was not made in response to what was happening in real time, but instead by what might happen. 

This is a very local example of a set of more global truths that I learned from critical scholars: language shapes ideology, ideology shapes policy, and policy shapes the material conditions under which we live. [1-5] 

In the example from my childhood, language about fragility shaped the choreographer’s idea of what was right for her to do, which shaped her decision to change my part, which impacted me in that moment and beyond.

Right now, there is a widespread and dangerous example of this set of global truths playing out in the language that has been used to describe chronically ill, disabled, and immunosuppressed people like me throughout the covid-19 pandemic. 

Early in the pandemic, chronically ill, disabled, and immunosuppressed people were framed as disposable, or less inherently valuable. This was reflected in broad social messaging that “only chronically ill and older people were dying” of covid, suggesting that this need not worry us unless we were one such unlucky person. Within medicine, this rhetoric was reflected in forced or encouraged do-not-resuscitate orders and in the deprioritization of critical care for chronically ill and disabled people. [6-8]

As the pandemic continued, the rhetoric expanded to depict chronically ill, disabled, and immunosuppressed people as invisible. This can be seen in calls to “return to normal,” with language that “vulnerable people can just stay home,” and in the deprioritisation of younger disabled and chronically ill people like me in vaccine rollout in many states in the US. [9,10] It can be seen in public health guidelines that imply that it is safe to resume pre-pandemic activity once vaccinated, when the efficacy of the vaccine for immunosuppressed people is not yet known, and many such people are not mounting a strong antibody response to covid. [11] 

More recently, a pre-print that documents the incubation and evolution of covid variants in immunosuppressed patients calls the patients “an alarming source of potentially harmful SARS-CoV-2 variants,” and a JAMA review calls immunosuppressed people the source of “variants of concern circling the globe.” [12,13]

These rhetorics are connected: The rhetoric of immunosuppressed people as dangerous fuels and strengthens the rhetorics of disposability and invisibility. For example, the recommendation to consider withholding treatments that “put evolutionary pressure on the virus” from immunosuppressed patients—part of the rhetoric of dangerous—implies disposability: doing so may mean denying immunosuppressed patients potentially life-saving treatments. [13] The same piece recommends that we consider extending isolation times for immunosuppressed people, fueling the rhetoric of invisibility.

This culture of discrimination and erasure has been around for ages, but it has been amplified in the covid-19 pandemic, and it adds to discrimination and erasure that is felt by people living at the intersection of multiple sites of oppression. [14,15] It magnifies chronically ill and disabled people’s pain due to isolation, restricted care, and in some cases exacerbated or new symptoms or conditions from contracting covid-19.

Healthcare providers and researchers: the language you use matters. It matters because it is felt in context, and the current linguistic context for many chronically ill, disabled, and immunosuppressed people is painful. It matters because the way you talk about us shapes ideology, policy, and the material conditions in which we live. 

Please keep researching so that I can make decisions informed by science. As you do, engage patients in the pre-submission and review processes; assume your audience includes chronically ill, disabled, and immunosuppressed people, and center the experience of those most at risk of harm as you shape your message; receive trauma-informed training and infuse the insights into your writing. Help change the story, while we still can.

Amy D. Robertson is a disabled and chronically ill researcher, professor, writer, and advocate. You can follow her on Instagram (@amy.d.robertson).

Competing interests: none declared

Acknowledgments: I am grateful to Leslie Atkins Elliott, Tali Hairston, Alyssa MacKenzie, Justin Robertson, Déana Scipio, and Candace Tkachuck for their feedback.

References:

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6. https://www.theguardian.com/world/2021/feb/13/new-do-not-resuscitate-orders-imposed-on-covid-19-patients-with-learning-difficulties
7. https://www.npr.org/2020/12/21/946292119/oregon-hospitals-didnt-have-shortages-so-why-were-disabled-people-denied-care
8. https://www.nytimes.com/2020/03/20/us/coronavirus-in-seattle-washington-state.html
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