‘LGBTQ+ People with Chronic Illness’: Book Review

Emily Mendelson reviews LGBTQ+ People with Chronic Illness: Chroniqueers in Southern Europe by Mara Pieri (Springer, 2023).

Book Cover of Mara Pieri's 'LGBTQ+ People with Chronic Illness'
Source: Springer Nature, bit.ly/41L4ttW

As the ongoing coronavirus pandemic continues, millions of individuals find themselves chronically ill as a result of Long COVID (O’Mahoney et al. 2023). Additionally, lockdown mandates and periods of social isolation due to COVID-19 led to an increase in expansive sexual and gender identifications (Bach 2022). Subsequently, the amount of queer, chronically ill individuals is expanding as a result of an ever-changing social condition. In her book LGBTQ+ People with Chronic Illness: Chroniqueers in Southern Europe, Mara Pieri deftly explores the intersections of chronic illness and queerness at a time where the coronavirus pandemic has intensified and extended chronic illness experiences. Importantly, Pieri acknowledges that many experiences of chronicity pre-date the pandemic’s start, and have historically been connected to forced periods of social isolation due to stigma and an inaccessible world.

Utilizing both crip studies and queer theory, Pieri is interested in the ways “heteronormativity and able-bodiedness (re)produce norms that affect the ways bodies are perceived” (2023, 2) through interviews with individuals in Portugal and Italy. Crip studies is a radical reclamation of the longer “c” word used to discriminate against disabled individuals. As a field of study, crip theory embraces differences between individuals and claims crip as a valuable social/political identity that exists directly in contrast to ableist norms that prioritize a singular norm of body performance (McRuer 2006; Kafer 2013). Similarly, queer theory rejects how LGBTQ+ identities are stigmatized in civil society and understands how queerness reshapes what anticipated norms of gender and sexuality should be (Halberstam 2011; Ahmed 2006). Both fields reject societal norms, embrace failure as a mode of resistance, and critique expectations of bodily performance, specifically able-bodiedness and heterosexuality (Kafer 2013; Halberstam 2011). In this book, Pieri locates her work within a broader field of crip-queer scholarship, utilizing similarities between queer theory and crip theory to better understand how time, care, and visibility are considerations for queer, chronically ill individuals.

Pieri identifies three shared aspects of chronic illness: temporal considerations, invisible and unrecognizable symptoms, and the connection between sociocultural understandings of health and how illness is experienced (2023, 18). That is, chronic illnesses do not follow linear patterns and can flare up at any time, subverting capitalist demands of productivity and timeliness. Here, Pieri turns to concepts of crip time and crip failure to interrogate the possibility of queer-crip temporalities and the experiences of queer-crip individuals. Queer-crip time, then, dislocates the present and “implicates an active intervention in the past, for example through the recuperation of historically silenced narratives of disabled and ill communities or the construction of queer-crip archives”(Pieri 2023, 36). Secondly, queer-crip failure embraces the necessity of ‘failure’ for disabled individuals: that is, the failure to adhere to expected timelines of life milestones, of labor, and of reproduction (Mitchell, Snyder, and Ware 2014; Kafer 2013; Halberstam 2011; Pieri 2023).

Pieri’s book is organized much like a scientific paper where the chapters act similarly to different sections of an article. Chapter Two, the literature review, is theoretically rich and could easily become the foundation for an entire syllabus on crip and queer theory. Chapter Three serves as the methodology section, which describes Pieri’s considerations and challenges when undergoing embodied research and data collection, which was collected through interviews with queer-crip individuals in Portugal and Italy who are affected by the cultural norms, politics, and laws, of their countries. The content sections (Chapters Four to Six) identify how care, fluctuations within interpersonal relationships, and precarity are central to the experience of chronically ill and queer individuals. In these chapters, Pieri’s participants demonstrate how the chroniqueer experience (coined by Pieri to describe LGBTQ+ chronically ill individuals) necessitates constant negotiations between the disclosure of personal identities. These identity negotiations impact access to resources and care, relationship support, and financial security. Given the geographical context of Italy and Portugal, many participants come from families that have been shaped by socially conservative views of Catholicism, and as such, experience discrimination due to their queer identities that do not align with their families’ religious beliefs. However, the sociological desire to “cure” disability and impairment (Hughes 2012) leads to many individuals needing to stay with their families of origin regardless of lack of acceptance of gender or sexuality.

A salient concept throughout the book is Pieri’s notion of chroniqueer visibility, which she contextualizes within queer theory’s conceptualizations of “passing”. Passing asks how individuals strategically make their identities visible, or, are able to keep aspects of what would be considered socially non-normative hidden to others. For example, a chronically ill individual can “pass” as able bodied if they do not have a visible impairment, and bisexual people are often able to “pass” as heterosexual depending on their relationship partner. In this sense, crip and queer identities are strategically made visible or hidden for chroniqueers in Pieri’s book. For example, some participants decided not to disclose queer identity to medical professionals in order to prevent stigmatizing care. Importantly, chroniqueers found themselves having difficulty disclosing crip identity in queer spaces, as well as queer identity in crip spaces when seeking community, relationships, and care.

One notable limitation of the research sample that Pieri acknowledges is the lack of trans and non-white individuals speaking about their chroniqueer experience. The lack of these individuals in the stories represented complicates the idea of passing, and further motivates intersectional questions (Crenshaw 1991) since the majority of participants in Pieri’s study are able to both strategically deploy and hide their crip and queer identities depending on the context they are in. However, a focus on passing may render crip-queer individuals who either do not pass, or do not want to pass, as hypervisible and at risk of discriminatory violence. Secondly, an intersectional lens affords researchers the ability to understand how the impossibility for individuals to invisibilize their racial identity is connected to motivations to conceal (or refuse to conceal) queer and crip identities as well. To this end, I think that this complicates the idea of passing as an inherent good given that passing is inaccessible to many, a claim that Pieri is aligned with when theorizing about the complicated nature of visibility. Although exaggerated performances of crip identity are sometimes necessary in order to receive accommodations or validation for others – a careful consideration for individuals who are discredited and disbelieved about their health (Siebers, 2004) – it may be that chroniqueer visibility for those that can do so safely is essential to a queer-crip politic of chronic illness.

To this point, I think it would be valuable for future avenues of queer-crip research to engage more closely with the work of queer-crip scholars of color who speak to the experiences of individuals who are not afforded the ability to pass, as well as engage in methods of crip-of-color critique (Kim, 2017). For example, Jasbir Puar’s (2017) work on how debility is sustained through global regulatory mechanisms and Leah Lakshmi Piepzna-Samarasinha’s (2018) work on care webs, queer-crip organizing in Toronto, and crip futurity seem particularly important when thinking about how care, relationships, and precarity (the content chapters of Pieri’s book) are related to non-white, non-cis individuals. Piepzna-Samarasinha’s (2018) idea of care work, for example, might offer exciting possibilities to Pieri’s descriptions of chronically ill individuals as both care givers and care receivers, as well as how friendships and relationships are transformed in the context of care. Although some of Pieri’s participants live in rural communities that serve as geographical barriers to organizing, queer-crip care webs have existed both online and offline to foster chroniqueer survival. For example, Sins Invalid, a “disability justice based performance project that incubates and celebrates artists with disabilities, centralizing artists of color and LGBTQ / gender-variant artists as communities who have been historically marginalized” and Alice Wong’s Disability Visibility project utilize strategic visibility to form community both online and offline. Subsequently, it would be interesting to explore how the individuals Pieri interviewed may be able to find community online and navigate chroniqueer identity following work on mediated intimacy and community (Andreassen et al. 2017; Berlant 1998).

Pieri’s book is exemplary in demonstrating how social scientific data collection can be guided by critical theory and principles. Her engagement with both crip studies and queer theory aids in building disciplinary connections, and as such, facilitates valuable scholarly dialogue to further add to crip-queer theorizations. Her book serves as an exciting contribution to both crip and queer theory, and encourages scholars to consider the potential for a politicized chroniqueer identity in the future.

About the Author

Emily Mendelson is a first-year Ph.D. student in the Department of Communication at the University of Illinois. Her research utilizes critical disability theory to study health communication, mediated relationships, consent, and interpersonal communication in order to better understand (1) how individuals are disenfranchised in relationships, and (2) the relationships between media and sexual identity formation. You can connect with Emily on Twitter @emmendelson or email her at emilyamendelson@gmail.com.

References

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Bach, Katie. 2022. “New Data Shows Long Covid Is Keeping as Many as 4 Million People out of Work.” Brookings (blog). August 24, 2022. https://www.brookings.edu/research/new-data-shows-long-covid-is-keeping-as-many-as-4-million-people-out-of-work/.

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O’Mahoney, Lauren L., Ash Routen, Clare Gillies, Winifred Ekezie, Anneka Welford, Alexa Zhang, Urvi Karamchandani, et al. 2023. “The Prevalence and Long-Term Health Effects of Long Covid among Hospitalised and Non-Hospitalised Populations: A Systematic Review and Meta-Analysis.” EClinicalMedicine 55 (January). https://doi.org/10.1016/j.eclinm.2022.101762.

Piepzna-Samarasinha, Leah Lakshmi. 2018. Care Work: Dreaming Disability Justice. Vancouver: Arsenal Pulp Press.

Pieri, Mara. 2023. LGBTQ+ People with Chronic Illness: Chroniqueers in Southern Europe. Cham: Springer International Publishing. https://doi.org/10.1007/978-3-031-22071-5.

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