Abstract
LGBTQ+ People With Chronic Illness is a sociological study of the difficulties young adults in Southern Europe face when simultaneously dealing with the compulsory systems of cis-heteronormativity and able-bodiedness. These difficulties are not examined as personal struggles – although the book does not lack the personal touch – but are perceived as social, cultural and symbolic obstacles in everyday practices and imaginaries, which fire up unexpected forms of resistance. Through 24 narrative interviews with young adults between 24 and 40 years old who self-identify within the LGBTQ+ spectrum and have one or more chronic illnesses, the book addresses the pressing question of what LGBTQ+ issues have to do with chronic illness. Are the experiences of being a young LGBTQ+ person and having a chronic illness related and relatable in any way?
The interviews were conducted between 2016 and 2019 in Southern Europe, more specifically in Portugal and Italy. Southern Europe in this case operates as ‘a hermeneutical device designed to highlight a series of historical facts that enhance the potential for comparative work, more so than corresponding to any strict geographical area’ (Trujillo and Santos, 2014: 14). The case selection is based on the two countries’ Catholic-oriented culture, their familistic system that represents a second welfare and the precariousness caused by the economic crisis of 2008 (Pieri, 2023: 7). The identification of these common threads, however, mostly serves a parallel reading of Italy and Portugal, rather than a comparative study that would stress a deeper understanding of local historical and cultural differences. In this way, when absorbing the findings of the research, the reader does not pay that much attention to the provenance of the testimonies: Italy and Portugal often appear as interchangeable territories, thus reproducing ideas of Southern Europe’s homogeneity. An important exception to this occurs when the book touches upon parenting choices for LGBTQ+ people, in which case the different legal frameworks in Italy and Portugal highlight stark differences in the interviewees’ practices and imaginaries. Regarding the sample of the research, one should mention that trans and non-White experiences are lacking. This is a missed opportunity, which, however, does not derive from a lack of awareness or sensitivity on the part of the author. In fact, Pieri (2023: 53) talks about specific efforts to spread the call within the trans community and racialised groups, which however did not work. This perhaps reflects structural inadequacies inherent in the way academic calls for interviews are circulated, in the sense that the channels through which these calls are disseminated cannot reach certain groups of people. Furthermore, even the few calls that manage to spread among marginalised groups fail to inspire trust in the research or motivation for participation. In any case, this gap in the study urgently calls for future investigation.
Nevertheless, the book does an astonishing job of filling an important shortcoming of the relevant literature, namely that of the double knowledge gap, formed by the absence of research on how sexuality relates to the experience of chronic illness in the field of sociology of health and illness and by the scarcity of published work on the intersections between LGBTQ+ lives and chronic illness in queer studies. Departing from Crip theory and critical disability studies, Pieri (2023: 23) starts a theoretical journey in search of analytical tools for an uncharted territory of research: she finds shelter in the critique to normalcy, the conceptualisation of able-bodiedness as a system of compulsion, the centrality of failure as a site of resistance and the theory of intersectionality. This journey leaves her with three lines of inquiry which traverse the entire book: time, care and (in)visibility are constantly discussed and negotiated in the narratives of the interviewees.
Time is perhaps the pivotal element of the book. After all, when examining the experiences of young adults, one investigates a particular period of a person’s life in which a certain level of autonomy is expected to have been achieved. Furthermore, time is an inherent feature of chronic illness whether it refers to its duration, its moment of appearance or the temporality of flare-ups and peaks. Heteronormativity, on the other hand, organises time around social expectations regarding good citizenship. Freeman (2010) coins the notion of ‘chrononormativity’ to describe the pervasiveness of a common timeline that we all, presumably, share. In this context, the imperatives of reproduction, maximum productivity and happiness are understood as mere somatic facts. Some bodies, however, at least more than others, fail to follow the rhythms of heteronormative chronos by doing ‘too much of the wrong thing at the wrong time’ (Kafer, 2013: 35). Queer temporalities enter Pieri’s framework to challenge the way in which time is approached and performed, considering the political potential of the queer art of failing. Similarly, Crip temporalities suggest working through the mismatch of the timing of the illness and normative rhythms. This failure or, differently put, this brilliant imperfection is seen as yet another form of embodiment.
Passing on to the second line of inquiry, the book approaches care as a relational and consensual apparatus, which emerges in formal and informal settings. Pieri closely examines the networks of interdependency for emotional, economic and practical support in families of origin in Southern Europe. The gender dimension of care is well highlighted in the book: women are more expected than men to take care of chronically ill members of the family, as they also do for the elderly in need and children. What is extremely interesting in the cases that Pieri investigates is how care keeps changing form: support to a young member of the family is most probably provided when it comes to dealing with matters of chronic illness but could be denied when LGBTQ+ issues present themselves. The author goes a step further, revealing a more complex situation in which chronic illness often triggers a revision of priorities in the families of origin, thus influencing attitudes towards gender and sexual diversity. Nevertheless, in the familistic system of Southern Europe, a situation of hyper-care of chronic illness combined with a silent indifference regarding LGBTQ+ issues seems to prevail. The book also examines care in families of choice (friendships and partnerships). Even in the micro-politics of intimacy, however, care calls for the negotiation of boundaries and clear communication. With an original twist, the book shifts attention to self-care practices, overturning the dominant image of chronically ill people as simple care recipients, instead approaching them as care providers.
On the macro-analytical level, care is examined in the healthcare system and LGBTQ+ spaces. The findings in this regard are not very encouraging. Sufficient training of healthcare staff on LGBTQ+ issues is still lacking, resulting in the dismissal of symptoms and the minimisation of pain by healthcare providers for young chronically ill adults who fall outside the cis-heteronormative order. LGBTQ+ spaces, on the other hand, are not always physically accessible nor are events and happenings designed with Crip temporalities in mind, making it difficult for members of the community with chronic illnesses to engage in activist practices.
The third line of inquiry, (in)visibility, is a navigational tool Pieri uses to signal the continuum of performative practices of visibility and invisibility that take place at the intersection of gender and sexual diversity and chronic illness. Unlike many disabilities, chronic illnesses often cause invisible symptoms, something that renders the management of visibility according to context possible. Depending on cultural, social and emotional factors, LGBTQ+ people also enact strategies of (in)visibility that are neither permanent nor fixed. In this respect, interviewees demonstrated great alertness in reading the room, recognising cues and choosing which information about themselves is safe to share. One decides, for instance, to be visible in the family setting as chronically ill but chooses not to come out as an LGBTQ+ person while making visible their LGBTQ+ identity but not their illness in the working environment. By valuing pain and calculating safety, interviewees make decisions on the spot as to how to alternate closets.
In addition to the theoretical and empirical insights of this study, Pieri embarks on a political project and an epistemological experiment. She suggests the notion of the ‘chroniqueer’ as a political figuration which makes the intellectual shift from the struggle experienced on an individual level to the struggle arising from a collective point possible. According to the book’s findings, such a political subjectivity has not (yet) been formed. In fact, many of the interviewees did not immediately see how cis-heteronormativity and ableism work together. What is more, chronic illness, unlike disability, does not constitute an umbrella term under which organisations operate. Nonetheless, just because the chroniqueer does not exist at the moment, it does not mean that it is not in the making. This book brings us closer to its emergence by cripping and queering both temporalities and methodologies, and it does so in an informative and sensitive manner.
‘A friend of mine bought me this crutch. Then she bought specific paint and we decided to paint it’ says Momo, a 32-year-old interviewee from Portugal referring to practices of care (Pieri, 2023: 94). LGBTQ+ People With Chronic Illness is perhaps the paint on that crutch, something that does not directly solve the problem, but relieves the pain that comes with it. It is a gift to research, rendering any future work on the topic not only easier, as the map is already set, but also more challenging, as there are no more excuses as to where this research path leads.