LGBTQ+ People with Chronic Illness:

Chroniqueers in Southern Europe Mara

Pieri
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LGBTQ+ People with
Chronic Illness
Chroniqueers in Southern Europe
Mara Pieri
LGBTQ+ People with Chronic Illness
 Mara Pieri

LGBTQ+ People with

Chronic Illness
Chroniqueers in Southern Europe
Mara Pieri
Centre for Social Studies
University of Coimbra
Coimbra, Portugal

ISBN 978-3-031-22070-8    ISBN 978-3-031-22071-5 (eBook)

https://doi.org/10.1007/978-3-031-22071-5

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To all the chroniqueers out there.
 Acknowledgements

I was often told that writing is a solitary endeavour, made of multiple mis-
takes, hovering doubts, and ephemerous satisfactions. However, while
working on this book, I have never felt alone: it is now both intimidating
and relieving to have the opportunity to acknowledge the extended sup-
port I received.
I am deeply grateful to the Centre for Social Studies, University of
Coimbra (CES-UC), the institution I am honoured to be part of. During
the PhD programme in “Human Rights in Contemporary Societies” I
began this research and I found a productive and engaging environment.
I am particularly grateful to my supervisors, Bruno Sena Martins and Elia
AG Arfini: their wisdom and their critical minds pushed me and encour-
aged me every step of the way to do my best. Thank you to the colleagues
at CES-UC who stimulated important dialogues, in particular to Ana
Lúcia Santos, Ana Cristina Santos, Boaventura de Sousa Santos, Cecília
MacDowell Santos, Daniel Neves, Fernanda Belizário, João Arriscado
Nunes, Pablo Pérez Navarro, Rita Alcaire, Susana Noronha, Tiago Pires
Marques, and the wonderful colleagues of the GPS-CES (Sexuality
Research Group). Thank you also to the administrative staff, especially the
GAGEP and the PhD office, for their impeccable support. Through these
years, I learned very much from the work of brilliant colleagues: thank
you, Eduarda Ferreira, Isabel Crowhurst, Miguel Vale de Almeida,
Sebastian Mohr, and Zowie Davy, for providing guidance and inspiration.
During the visiting periods at the Universidad Complutense de Madrid
and the University of Turin, I had the opportunity to learn with Ignácio

vii
viii ACKNOWLEDGEMENTS

Pichardo Galan, Chiara Bertone, and Raffaella Ferrero Camoletto, to

whom I am also grateful.
This research was possible, thanks to the precious institutional support
of the FCT—Fundação pela Ciência e a Tecnologia, through a PhD grant
(PD/BD/114078/2015) and a CEEC grant (2021.03925.CEECIND).
In 2020, the prize “Controtempo”, awarded by Codici Ricerca e
Intervento allowed me to engage with a larger public outside academia:
the patients and activists met through the platform “Chroniqueers”
enriched my perspective in unforeseen ways. I am thankful to each of them.
A special thanks to Palgrave Macmillan, namely to Nina Guttapalle and
Tikoji Rao, for providing excellent guidance throughout the process of
publication.
As much as the academic environment was crucial to write this book,
there is a whole network of affects without which I could not have com-
pleted it. My gratitude towards my parents, Claudio and Gabriella Pieri,
cannot be expressed in words: they taught me to work hard, pursue my
path, and enjoy life along the way. A large thank you to my extended,
noisy, loving family for never questioning what I was doing even when it
was hard to understand. A special thought to my niece Maia and nephew
Diego: I hope you will read this book in a time in which many things will
have improved in our country.
I am grateful beyond words to Carlo, Elisa, Federica, and Laura, my
friends of a lifetime; to Paola and Serena, who let go of my hand; to Marija
and Grazia, my feminist rocks; to Alessandro and Giulia, my unshakeable
sources of support; to Angela, Joaquim, and Simone, who adopted me in
their family. Thank you, Ana Lúcia Santos, Daniel Neves, Gustavo Elpes,
Joana Brilhante, Mafalda Esteves, and Pablo Gilolmo Lobo: I am twice as
blessed for counting on you as wonderful friends while also witnessing the
beautiful academic work you do.
I would not be who I am without the never-ending exchange with my
fellow warrior spoonie Elia: you are my everyday superhero.
Finally, thank you to my fabulous Cristina, for igniting countless revo-
lutions and securing my hand at all times. Your fierce love, brilliant mind,
and unwavering trust made this journey worth every bit: you know, this is
just the beginning.
This work belongs to the interviewees who trusted me with their life
stories. I hope this book is a step towards changing the world: together, at
our own pace.
 Contents

1 Introduction  1
1 Hic Sunt Dracones?  1
2 Time, Care, (In)visibility  4
3 Chapters Outline  6
References 10

2 A
 Queer-Crip Perspective on Chronic Illness 13
1 Introduction 13
2 Chronic Illness: Biographical Disruption or Normal Chaos of
Life 14
2.1 The Prismatic Nature of Chronic Illness 14
2.2 Chronic Illness and LGBTQ+ People 18
3 Against Normalcy: Crip Theory, Disability, and Illness 22
3.1 The Emergence of Crip Theory 22
3.2 Cripping Chronic Illness 26
4 Queer-Crip Temporalities: A Proposal 29
4.1 Chrononormativity: The Obligation to (Re)produce,
Be Happy, and Get Well 29
4.2 Too Much of the Wrong Thing at the Wrong Time:
Queering Kronos 33
4.3 Can We Queer and Crip Time? 34
References 37

ix
x Contents

3 LGBTQ+
 Rights and Access to Healthcare in Italy and
Portugal 43
1 Introduction 43
2 Southern Europe: God, Family, and Austerity 44
2.1 Catholic Culture 44
2.2 Familism 45
3 Economic Precariousness 46
4 LGBTQ+ Rights Between Tensions and Surprise 47
4.1 The Politics of Indifference: Italy 47
4.2 The Avalanche of Legal Changes: Portugal 48
4.3 Healthcare and Welfare 49
5 Methodology and Challenges of the Research 50
5.1 Doing Queer-Crip Research: The Tools 50
5.2 The Sample and the Fieldwork 53
5.3 The Inside Job 54
5.4 The Wounded Researcher 55
References 56

4 Intimacy
 and Sexuality: Weaving Significant Relationships 59
1 Introduction 59
2 The Closer Ones: Negotiating Identities with Families and
Friends 60
2.1 Inherited Families: The Struggles as LGBTQ+ and Ill 60
2.2 Alternating Closets: Friendships 64
2.3 Friendship: A Matter of Time and Place 66
3 Spaces of Intimacy 68
3.1 (In)visibility in the Time of Dating 68
3.2 Desire, Communication, and Sexual Practices: When
Illness Comes to Bed 72
3.3 Bodies That Change, Relationships That Change 74
4 Able-Bodied and Reproductive? The Pressures to Normalcy 77
4.1 Being Ill Together 77
4.2 The Procreative Imperative 78
4.3 Imaginaries of LGBTQ+ Parenting 80
5 Conclusions 82
References 83
 Contents  xi

5 Negotiating
 Care Between Silences, (In)visibility, and
Disobedience 85
1 Introduction 85
2 Negotiating Relationships of Care 86
2.1 Care as a Duty 86
2.2 Care as a Form of Control 90
2.3 Care as a Choice 92
2.4 Care as a Gift 94
3 The Unseen Faces of Care 96
3.1 Not Only Care Recipients: Narratives of Care Providers  96
3.2 Mental Health 97
3.3 Learning Self-care100
4 Healthcare Contexts and Medical Power102
4.1 Being an LGBTQ+ Patient102
4.2 Sexism, Fatphobia, and Discrimination in the
Doctor’’s Room104
4.3 Disobedient Patients: Grappling with Medical Power106
5 Conclusions106
References108

6 Precarious
 Lives. Navigating Through Work, Public
Spaces, and Activism109
1 Introduction109
2 Precariousness at Work and Because of Work110
2.1 (In)visibility at Work110
2.2 A Necessary Destiny: Precariousness113
2.3 Don’t Leave to Live: Family Ties and Cohabitation116
3 Inhabiting the Public Space119
3.1 Accessibility in Space and Time119
3.2 The (In)visibility Dilemma in the Public Space121
3.3 Only for Spectators: Performing for the Social Gaze122
4 The Politicisation of Pain in Activism125
4.1 The Epistemology of Ignorance in LGBTQ+ Spaces125
4.2 The Bionic Bodies of LGBTQ+ Activists128
4.3 An Ensemble of Atoms: Activism on Illness131
5 Conclusions133
References134
xii Contents

7 The
 Emergence of the Chroniqueers137
1 Introduction137
2 Blurring Boundaries of Time, Care, and (In)visibility138
2.1 Queering and Cripping Time138
2.2 Reimagining Care139
2.3 Reconsidering (In)visibility142
3 Back to This Scene: The Future and the Chroniqueers144
3.1 The Unmapped144
3.2 Hic Sunt Chroniqueers146
References150

Index151
 About the Author

Mara Pieri Researcher at CES, she holds a BA and MA in Sociology from

the University of Trento. She holds a PhD in “Human Rights in
Contemporary Societies” from CES, with a thesis on the experiences of
LGBTQ+ adults with chronic illness in Italy and Portugal. Her PhD
research won the “Controtempo” Prize, awarded to early-career research-
ers by Codici Ricerca e Intervento (Milan) to develop the multimedial
project “Chroniqueers” (www.chroniqueers.it). She has deep expertise as
consultant in inclusive and accessible communication, and communica-
tion of science. Since 2018 she coordinates the Research Stream on
Sexuality and Gender of the APS—Portuguese Sociological Association.
She co-organises the series of seminars “Sharp Talks—Health, Sexuality
and Human Rights” at CES and she integrates the thematic line
“Democracy, justice and human rights”. She is a member of the research
team in the project “REMEMBER—Vivências de Pessoas LGBTQ Idosas
no Portugal Democrático (1974–2020)”. In 2021 she was a postdoctoral
researcher at CES. After winning the national competition CEEC by FCT
she has been a researcher since 2022 and will develop her project on
LGBTQ+ access to healthcare until 2027. She works on disabilities studies
and queer and crip studies through an intersectional approach and a spe-
cific focus on chronic illness. Her research interests include supercrips,
medicalisation, chronic illness and invisible disabilities, accessibility, sexu-
alities in Southern Europe, and LGBTQ+ health.

xiii
 CHAPTER 1

Introduction

1   Hic Sunt Dracones?

Each of us is an atlas of sorts, already knowing how to navigate some por-
tion of the world containing innumerable versions of place as experience and
desire and fear, as route and landmark and memory. Rebecca Solnit (2018)

What have LGBTQ+ issues to do with chronic illness? Are they related and
relatable in any way? I heard this question countless times while research-
ing these topics. It is always disconcerting to understand how something
that constitutes the core of our interest is insignificant or even inexistent
for others. While recruiting participants for the study, I received this e-mail
from a prospective interviewee: “I am queer and I have a cardiac illness.
But I feel like the former is a choice, the second a mere fate. They are not
related and I cannot see how they could be. However, if that is what you
are looking for, I am available for an interview”.
The puzzlement in this message and the adamant separation between
choice and fate made me understand that the challenge in this research
would be to make space for multiple possibilities.
To explain what I was doing I would often think about the images of
ancient maps. In the cartographic attempts made in Western countries in
medieval times, cartographers would populate all unknown territories
with monsters, dragons, and bizarre animals. They would identify such

© The Author(s), under exclusive license to Springer Nature 1

Switzerland AG 2023
M. Pieri, LGBTQ+ People with Chronic Illness,
https://doi.org/10.1007/978-3-031-22071-5_1
2 M. PIERI

creatures with the expression hic sunt dracones, here be dragons, or hic
sunt leones, here be lions. The uncharted territory was at the same time
known and unknown: its existence was known, but its contours had not
yet been explored (by them).
This book is an exploration of uncharted territory: it aims to analyse the
narratives of young LGBTQ+ adults with chronic illnesses living in Italy
and Portugal. LGBTQ+ stands for Lesbian, Gay, Bisexual, Transexual,
Queer and every other sexual orientation, gender identification, gender
expression, and relational orientation which fall outside the cisgender and
heterosexual alignment. My interest in the topic sparked through different
diluted moments. As a chronically ill person, I often noticed how chronic
illness per se challenges the ideas of able-bodiedness and vulnerability.
During these years, I came to know several people who self-identified as
LGBTQ+ and had a chronic illness: we would often end up sharing views
that identified connections and unseen links between two experiences of
(in)visibility and struggle. I became eager to find a reflection of these hints
in academic literature: when I realised there was not so much about the
topic, I felt compelled to investigate it. Emma Willard, feminist and geog-
rapher, stated: “This is not so much a subject which I choose, as one which
chooses me. It comes unbidden to my mind, and like an intrusive guest,
there it will abide, and irresistibly claim my attention” (in Popova, 2018,p.
143). It is probably not by chance that Willard was also a professional
mapmaker that attempted to design maps in which time and space would
conflate. In her words I see how the subject of my work progressively
chose me, claiming my attention and stimulating my interest.
The book is based on qualitative research of 24 narrative interviews
conducted in Portugal and Italy between 2016 and 2019. Participants are
between 24 and 40 years old. They all self-identify within the LGBTQ+
spectrum and have one or more chronic illnesses. Moreover, it benefits
from contributions from activists and experts encountered during
fieldwork.
The objectives of the research are mainly three. In the first place, it aims
to explore to what extent the experience of chronic illness and self-­
identification as LGBTQ+ interplay in everyday lives. Referring to the
theoretical framework of crip studies (McRuer, 2006; Kafer, 2013) and
queer studies (Ahmed, 2006; Halberstam, 2011), I am interested in the
ways heteronormativity and able-bodiedness (re)produce norms that
affect the ways bodies are perceived.
 1 INTRODUCTION 3

In the second place, the research points out the language of human
rights to decode how multiple oppressions lead the way to unexpected
forms of resistance in everyday practices. Despite stark differences in the
frameworks of rights, in Italy and Portugal LGBTQ+ people still suffer
from discrimination, institutional homophobia, and harassment. Similarly,
for those with a chronic illness, access to healthcare, regular jobs, and
autonomous lives are often impeded by loose ends in the legislative under-
standing of chronic illness. This book addresses the experiences of inter-
viewees concerning their access to rights. However, it also aims at
understanding to what extent discrimination, exclusion, and violence give
rise to practices of resistance and different grammars of human rights
(Santos et al., 2019). The research corroborates whether the conjunction
of chronic illness and sexual and gender diversity, in the context of
Southern Europe, provides experiences for the formation of anti-­normative
(re)productive subjects.
Finally, the research aims at understanding which practices of time,
care, and visibility are put in place to deal with the pressures of heteronor-
mativity and able-bodiedness. Taking the theory of intersectionality as a
reference (Crenshaw, 1991), I interrogate what other multiple belongings
are at play, such as class, gender, cultural capital, and education. Moreover,
through the analysis of personal narratives, it analyses how interviewees
make sense of their identity and to what extent practices of resistance cor-
respond to political claims in this sense.
The research contributes to a double knowledge gap: in queer studies,
where studies on intersections between LGBTQ+ lives and chronic illness
are scarce (if we exclude studies on HIV amongst gay men); and in the
sociology of health and illness, where sexuality in general and, more spe-
cifically, the voices of LGBTQ+ communities rarely emerge. To a broad
extent, I often refer to critical and feminist disability studies about able-­
bodiedness, accessibility, and critiques of bodily normalcy.
Before moving to the outline of the book, I want to dedicate some
words to the language used and its emotional nuances. I grew up in Italy,
moved to Portugal for my PhD, and still live here. While conducting most
of my academic life in English, I learned Portuguese: at the beginning of
the fieldwork, I had reached a level of fluency that provided me with the
necessary basis to listen to the stories of participants. I often feel that
English is the language of the brain; Portuguese is the language of the
body; and Italian the language of the heart: juggling between them is a
constant exercise. So, whilst listening to the narratives in their original
4 M. PIERI

language offered a deep contact with participants, writing the book in

English often required “to love words, agonize over sentences” (Sontag
et al., 2007, p. 166). Some challenges regarding the choices of words were
particularly crucial. For example, despite initially considering this option,
I prefer not to use “queer” as an umbrella term, as it is used in English-­
speaking countries. In Southern Europe, queer is not commonly used as
an all-encompassing term (Pustianaz, 2011; Santos, 2013). To make this
work more readable—in the first place, to the participants of the study and
to the local contexts it relates to, I chose to adopt the general “LGBTQ+”.
I will also often refer to “sexual and gender diversity” as a synonym for
“LGBTQ+ positioning”. Given that these definitions are always contex-
tual in time and place, I am aware of their possible misalignment with
rapidly changing scenarios. Moreover, I prefer to use the notion of “(in)
visibility”, which signals the continuum between visibility and invisibility
both graphically and conceptually: this is one of the core topics of this
book and I will come back to it later on.
The emotional and academic relationships with two countries, three
languages, and two socio-political environments are the ingredients of this
work. The research is not comparative to the extent that it does not try to
offer a specular perspective of one country through isomorphic compari-
son to the other. On the contrary, it aims at showing the resonances and
the common elements, as well as the specificities and the differences of
each. Southern Europe works as a hermeneutic device (Trujillo & Santos,
2014) that provides bearings to read the narratives of the interviewees.

2   Time, Care, (In)visibility

The book revolves around three transversal lines of inquiry: time, care,
and visibility.
The first, time, is fundamental to understanding the very concept of
adulthood in contemporary Europe. Adults are expected to be autono-
mous; to provide for themselves and be successful at what they do; to cre-
ate a family through monogamous coupledom; to reproduce through
linear bonds of blood. These expectations obey a linear conception of time
deeply impinged into neoliberal, heteronormative, and ableist patterns.
Being LGBTQ+ and chronically ill may represent a potential short circuit
into such linearity. On one side, chronic illness is tightly bound to tempo-
rality: not only it has an endless duration, but it also disrupts everyday time
into recursive cycles of activity and inactivity. Such a combination of
 1 INTRODUCTION 5

long-term and short-term temporalities changes the ability to be autono-

mous, work, and establish relationships. It often implies the necessity to
rely on economic assistance and networks of care; moreover, it jeopardises
access to (re)production rights. On the other side, LGBTQ+ people often
build relationships that fall outside the supposed linearity of normalcy: in
many countries, like Italy, these relationships are not even recognised by
the system of rights and parenting is denied. The existence of the so-called
rainbow families is mediated by laws, discrimination, and invisibility.
Queer temporalities are thus rooted in different rhythms that often escape
the linear normative ones. Therefore, time is a crucial lens to understand-
ing notions of social expectations, success, reproduction choices, and pro-
ductivity. How do chronic illness and LGBTQ+ identifications change the
relation to time? How do they influence the trajectories of partnering and
choices on reproduction? What are the consequences on working experi-
ences, productivity, and economic precariousness? How are normative
expectations on family and work felt in Southern Europe? Do gender and
sexual diversity and chronic illness cast subjectivities out of time or do they
contribute to the formation of new temporalities?
The second line of inquiry is care. Expanding the feminist notion of
care as relational (Tronto, 1994), I understand care as the formal and
informal relationships that provide support to LGBTQ+ and chronically ill
people. Chronic illness demands constant, often long-term, relationships
with the health system: medical doctors, nurses, personal assistants, and
therapists, amongst others. These relationships are mediated by cultural
meanings ascribed to illness and identity: for example, being visible as
LGBTQ+ may hinder the treatment received as a patient. What relation-
ships do LGBTQ+ and chronically ill people establish with healthcare?
How do the heteronormative healthcare systems filter the experience of
chronic illness? To what extent is formal healthcare prepared to under-
stand the needs of LGBTQ+ and chronically ill adults? What are the other
forms of care available to them? Besides formal healthcare, chronic illness
requires networks of interdependency for emotional, economic, and prac-
tical support. Literature shows that the centrality of families of origin in
providing care in Southern Europe resists other social changes and is rein-
forced by the configuration of the welfare state (Calzada & Brooks, 2013).
In LGBTQ+ activism, care is often celebrated as a way to escape the domi-
nant patterns of family and parenthood (Vaittinen, 2015): examples of
other forms of care include cohabitation with friends, informal economies,
and shared parenthood. The research addresses what kind of networks of
6 M. PIERI

care are significant for those who live as LGBTQ+ with a chronic illness.
How is support provided, what are the significant persons who have an
active role in it? What are the challenges and the obstacles? Which unex-
pected alliances emerge and which are confirmed in their centrality? What
is the role of families of origin and partners in these configurations?
The third line of inquiry is visibility, as inherently associated with invis-
ibility. Chronic illnesses mostly cause invisible symptoms and imply strate-
gies of management of visibility, as well as choices on passing as able-bodied
according to the context (Samuels, 2003; Wong, 2020). Similarly,
LGBTQ+ people commonly enact strategies of coming out and (in)visibil-
ity. Whilst visibility is often used in campaigns of awareness to promote the
importance of being out and proud, invisibility represents a viable strategy
to protect LGBTQ+ people in unsafe contexts. Both visibility and invisi-
bility are thus discussed as performative and contextual strategies deter-
mined by a vast array of cultural, social, and emotional factors. How are
these strategies managed? How does chronic illness contribute to the (in)
visibility of sexual and gender diversity? How does being LGBTQ+ change
the strategies of (in)visibility as chronically ill? To what extent is (in)visibil-
ity perceived as a political act? What is the role of social and physical pain
in the sense of safety and in the choices of coming out?
Time, care, and (in)visibility constitute red tape throughout the book.
They are so inextricably bound that they cannot be considered separate
elements of analysis: they represent a recursive frame of interpretation.
The questions posed are many and I will not answer them all: although I
believe it is important to find explanations for what we observe, I also
value the importance of producing new questions. In this, I follow Kafer:
“questions keep me focused on the inconclusiveness of my conclusion, on
the desire to think otherwise” (2013, p. 18).

3   Chapters Outline

The book is divided into two parts: the first (Chaps. 1 and 2) lays the theo-
retical, contextual, and methodological foundations of the research. The
second (Chaps. 3, 4, 5, and 6) explores the empirical material.
In Chap. 1 I outline a brief review of relevant literature produced on
chronic illness in the sociology of health and illness. I will also discuss the
literature elaborated on the intersections between chronic illness and
LGBTQ+ experiences, starting with works related to HIV amongst gay
men, which represent a genre in itself (Carricaburu & Pierret, 1995;
 1 INTRODUCTION 7

Hodges & Rodohan, 2004), and the contributions on breast cancer

amongst lesbian communities (Lorde, 1980; Sedgwick, 1999). I then
dedicate a section to crip theory (McRuer, 2006; Kafer, 2013), which
provides a deeper understanding of able-bodiedness as a system of com-
pulsory normalcy and a solid theoretical framework to understand chronic
illness. In the last part of the chapter, I discuss the centrality of the notion
of time from a queer-crip perspective (Freeman, 2011; Ahmed, 2006;
Halberstam, 2011) and how it is crucial to understand the entanglement
between chronic illness and sexual and gender diversity.
Chapter 2 provides a contextual overview of Italy and Portugal and, in
particular, the framework of rights for LGBTQ+ and chronically ill people.
There are persistent common aspects between the two countries: the
catholic-­oriented culture; the familistic system that represents second wel-
fare; the precariousness generated by the economic crisis of 2008. From
this point of view, Italy and Portugal fit into a narrative of Southern
Europe as familistic, Catholic-oriented, welfare-centred states (Calzada &
Brooks, 2013). However, they also show blatant differences from each
other, in particular regarding LGBTQ+ rights. The third part of the chap-
ter presents the methodology aspects and the challenges encountered dur-
ing the research. In particular, I reflect on what it meant to employ a
queer-crip perspective during the work and how as a chronically ill
LGBTQ+ researcher I interacted with the research. I also describe the
sample and methods employed.
The theoretical and methodological chapters constitute the founda-
tions for the construction of the analytical section. Divided into three
empirical chapters and a conclusion, the section as a whole is to be under-
stood as a recursive itinerary made of reverberations between the elements
of time, care, and visibility at the core of this analysis. The analytical pro-
cess follows a path that goes from the very intimate context of relation-
ships and sexuality, through care networks, to the larger stage of public life
in work and activism. The last chapter, Chap. 6, is the conclusion of the
journey.
Chapter 3 discusses how significant relationships are constructed
through the experience of illness for LGBTQ+ interviewees. The discus-
sion moves from a closer look at the relation with inherited families (or
families of origin) to the level of chosen families (intimate and/or sexual
partners, friends) to a take on imagined families (parenting and partnering
in the future). The chapter illustrates the multiple challenges experienced
by interviewees in establishing intimate relationships while they deal with
8 M. PIERI

homophobia, ableism, and heteronormative expectations. It also investi-

gates the structural violence in micro-politics of intimacy and the choices
of (in)visibility operated in intimacy to managing the struggles coming
from chronic illness. The analysis finally explores whether the careful bal-
ance between (in)visibility, time, and bodily ability provides the basis for
the elaboration of counter-normative practices of intimacy.
At the centre of Chap. 4 is the focus on care, as the result of negotia-
tions between silences, (in)visibility, and resistance to expectations. The
practices of care enacted are analysed through the meanings that partici-
pants ascribe to them. Although relational and consensual, care always
involves negotiations on power relations and needs to be carefully man-
aged within significant relationships: it is the case, for example, when care
is dispensed as a moral duty felt by families of origin or as a form of control
over intimacy. In other cases, care is provided in contexts of less significant
relationships, such as by roommates, as the result of strategic choices by
interviewees. The narratives, however, also offer less expectable trajecto-
ries in the narratives of care, that overturn the dominant image of LGBTQ+
and chronically ill persons as care receivers and not as care providers as
well. Similarly, they provide accounts of the centrality of self-care and the
importance of body-mind balance concerning the psychological costs of
being LGBTQ+ and chronically ill. Finally, the chapter turns to the system
of formal healthcare, analysing the experiences of LGBTQ+ patients in
medical contexts and highlighting the multiple forms of violence, discrim-
ination, and invisibilisation they suffer as LGBTQ+. Many also face dis-
missal of symptoms and minimisation of pain that are often associated with
other forms of violence such as sexism, fatphobia, and ageism. Amidst the
struggles to be recognised as valid subjects, patients often elaborate strate-
gies of resistance against the medical power structures.
The final note on disobedience in Chap. 4 constitutes a cue for the
reflection on precariousness and activism, the topics at the centre of Chap.
5. In this chapter, the interest is devoted to the multiple, often subtle,
forms of precariousness that stem from fragility as workers, either because
of constraints as LGBTQ+ or because of chronic illness. However, the
analysis also shows that precariousness results from a combination of fac-
tors and is not only strictly related to working conditions. The genera-
tional aspects of precariousness are exacerbated by the impact of being
LGBTQ+ and having a chronic illness on various aspects of adult life.
Furthermore, the chapter discusses how the vulnerability is experienced in
the context of public spaces: the analysis puts at the centre the attention
 1 INTRODUCTION 9

on accessibility and safety. Again, the strategies of (in)visibility and the

pressures to perform in normative ways in some contexts are central to the
discussion. Finally, the analysis moves to activism as an arena in which pain
is shared and politicised. Whilst interviewees denounce the lack of acces-
sibility in LGBTQ+ spaces and the widespread ableism, activist organisa-
tions centred on the struggles of people with chronic illnesses seem to
ignore the importance of sexuality in the experience of illness, and, inevi-
tably, the relevance of LGBTQ+ stories. This double silence is a grim final
point that provides crucial points to be discussed further.
In Chap. 6, I reflect on the relevant discoveries made through the
research and on the surprising elements that emerged in the narratives col-
lected. I also focus on the possibilities for future research on the topic,
highlighting what remains unanswered and what was purposefully left out.
The analysis of the transversal dimensions of time, care, and visibility offers
lines of inquiry for the future and stimulates new questions to be explored.
Finally, I discuss the possibility to consider a political subjectivity I name
“chroniqueer” that epitomises the LGBTQ+ experience of chronic illness
as transformative for conceptions of time, care, and visibility. The choice
of using the notion of “chroniqueers”, from the union between “chronic”
and “queers”, denotes the will to look at chronic illness and LGBTQ+
identifications as two dimensions which work together, although with dif-
ferent dynamics, in a similar space of exclusion from dominant systems of
heteronormativity and able-bodiedness. The process of queering and crip-
ping the methodology and the theoretical frame leads to a different per-
spective on suffering and vulnerability: it creates significant spaces to
reconsider the normative understanding of human rights and to undo the
invisible ableism and heteronormativity that underlie mainstream concepts
of accessibility and inclusion.
The itinerary aims at creating an empirical analysis based on strong
theoretical fundaments, consistent methodological orientations, and inno-
vative analytical contributions. However, I do not intend to trace an
arrow-like linear path. The state of questions enunciated previously is the
key to reading the whole work: its main and deepest objective is to criti-
cally question dominant perspectives and to design terrains where,
amongst some answers, more questions can emerge. Researching on top-
ics rarely explored implies a weight of added responsibility: it means work-
ing harder and better to construct solid arguments, being convincing of
their relevance, and showing the connections they may trigger to other
better-known topics. It also offers a privilege: the rare beauty of having
10 M. PIERI

doubts, being hesitant, and expressing uncertainty, all of which are rarely
considered good signs in academic work. In this challenging task, I often
found comfort in poems and literature. Some of these inspirations will
appear along the book to guide and offer alternative ways to interpret the
research; others constitute the core of the whole work. It is the case of the
beautiful poem by Adrienne Rich Diving into the wreck (1973) and I leave
to her words the difficult task of guiding the reader along the next pages:
“I came to explore the wreck. / The words are purposes. / The words are
maps. / I came to see the damage that was done / and the treasures that
prevail”.

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Crenshaw, K. (1991). Mapping the margins: Intersectionality, identity politics,
and violence against women of color. Stanford Law Review, 43(6), 1241–1299.
Freeman, E. (2011). Time binds: Queer temporalities, queer histories. Duke
University Press.
Halberstam, J. (2011). The queer art of failure. Duke University Press.
Hodges, I., & Rodohan, E. (2004). Living with homophobia: Exploring accounts
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Kafer, A. (2013). Feminist, queer, crip. Indiana University Press.
Lorde, A. (1980). The cancer journals. Aunt Lute Books.
McRuer, R. (2006). Crip theory: Cultural signs of queerness and disability.
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Popova, M. (2018). Figuring. Pantheon Books.
Pustianaz, M. (2011). Queer in Italia. Differenze in movimento.
Rich, A. (1973). Diving into the wreck; poems, 1971-1972. Norton.
Samuels, E. J. (2003). My body, my closet: Invisible disability and the limits of
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9(1), 233–255.
Santos, A. C. (2013). Social movements and sexual citizenship in Southern Europe.
Palgrave Macmillan.
 1 INTRODUCTION 11

Santos, B. d. S., Santos, C. M., & Martins, B. S. (Eds.). (2019). Quem Precisa dos
Direitos Humanos? Precariedades, Diferenças, Interculturalidades. Almedina.
Sedgwick, E. K. (1999). A dialogue on love. Beacon Press.
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and speeches. Farrar, Straus, and Giroux.
Tronto, J. (1994). Moral boundaries: A political argument for an ethic of care.
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Trujillo, G., & Santos, A. C. (2014). “The First Revolution Is Survival” queer and
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Wong, A. (2020). Disability visibility. First-person stories from the twenty-first cen-
tury. Vintage Books.
 CHAPTER 2

A Queer-Crip Perspective on Chronic Illness

1   Introduction
You know the name you were given; you do not know the name that you
have. José Saramago (1997)

Chronic illness represents a broad and controversial issue in the sociology

of health and illness. If it is well-established that it is a term that comprises
a variety of long-lasting conditions, they are not clearly recognised in all its
specificities. According to the WHO, chronic and non-communicable dis-
eases are not passed from person to person; they are of long duration and
generally slow progression. Other formulations refer to conditions that
last three months, are not preventable through vaccines, and cause impair-
ment, pain, or difficulties in everyday activities. They are not necessarily
life-threatening, although they are often accompanied by several other
conditions; they are characterised by periods of latency and time of flares-
­up which can vary in duration and gravity. The word “chronic” comes
from the Ancient Greek “Kronos” (time), so in the definition of chronic
illness the dimension of time is already evident.
Until the 1980s, most of the sociological debate treated chronic illness
as an individual condition that did not have a connection with social, cul-
tural, or even historical aspects. Changes in the 1980s triggered a major
shift also in the centrality of health and illness within sociology. Four

© The Author(s), under exclusive license to Springer Nature 13

Switzerland AG 2023
M. Pieri, LGBTQ+ People with Chronic Illness,
https://doi.org/10.1007/978-3-031-22071-5_2
14 M. PIERI

elements were fundamental in this shift. First, the defeat of several acute
diseases and the general improvement of life conditions determined the
extension of life expectancy. Chronic illness became a distinctive trait of
the new ageing societies, bringing new challenges to public health. Second,
a new conception of health not just as the absence of illness but as the
result of lifestyles, individual choices, and active life highlighted both new
forms of consumption and renewed social fears against illness. Third, the
rising conflict between welfare states, in particular national health services,
and neoliberalist pressures to privatisation. Finally, the influence of femi-
nist theory (Crenshaw, 1991; Rich, 1980) and post-structuralism
(Foucault, 1978) on sociology itself determined a shift from a general
focus on social policy to power relations, gender, class, and knowledge in
the experience of illness.
In this chapter, I will start by providing a brief account of the main
contributions to chronic illness, with a particular focus on the studies that
explored LGBTQ+ experiences. I will then introduce crip theory as a cru-
cial theoretical standpoint to critically explore the political meanings
attached to disability, illness, and health. Finally, I will focus on time and
chrononormativity as key elements of analysis. Intersecting the threads of
chronic illness, crip studies, and time, I aim to propose a queer-crip read-
ing of chronic illness which will be the basis for the rest of the book.

2  Chronic Illness: Biographical Disruption or

Normal Chaos of Life

2.1   The Prismatic Nature of Chronic Illness

The turning point in studies on chronic illness can be linked to the contri-
bution of Michel Bury (1982, 1991, 1997; Taylor & Bury, 2007). In the
attempt to consider both the individual and the social aspects of chronic
illness, Bury coins the expression “biographical disruption”:

The onset of illness, especially that which is not evidently self-limiting, frac-
tures this social and cultural fabric, exposing the individual to threats to
self-identity and a potentially damaging loss of control. […] Treating
chronic illness as a disruptive event in this way allows for its meaning to be
situated in a temporal and life-course context. Changes in the body and the
onset of symptoms simultaneously involve an alteration in the person’s life
situation and social relationships. (1997, p. 124)
 2 A QUEER-CRIP PERSPECTIVE ON CHRONIC ILLNESS 15

In the experience of chronic illness, “the structures of everyday life and

the forms of knowledge which underpin them are disrupted” (Bury, 1982,
p. 169): its onset requires individuals to recognise the existence of pain,
and, eventually, mortality, but also forces them to open to non-horizontal
relationships based on dependency and care. Most of all, chronic illness
changes the perception of time and creates new frames to make sense of
the present and the future.
Most chronic illnesses considered in the first decades of studies are con-
ditions that emerge unexpectedly, although Bury shows that they usually
“do no ‘break-out’, they ‘creep up’” (ibid., p. 170). The onset may be
insidious and involve a long time of uncertainty before a definitive diagno-
sis is reached, a time in which the symptoms may appear with no explana-
tion: at this stage, individuals may not recognise to what extent their body
is changing. Because of the persistence of negative social perceptions of
illness, they may also feel anxious, ashamed, or even angry at their destiny.
In this process of destruction and reconstruction of identity, time plays a
central role. Illness generates a “before” and an “after”: not only one’s
biography splits into two distinct phases, but also individuals are faced
with questions such as “why now?”, “what now?”, and “how long will it
last?”. The relation to time is modified also at the everyday level, where
activities, relationships, and tasks need to be defined to accommodate the
needs created by illness.
While disrupting the present, chronic illness also provokes the accelera-
tion of the future, bringing people to experience premature ageing, and a
closer perception of mortality or of “the risks attached to life” (Brown
et al., 2013). However, in Western countries, chronic illness is generally
considered a common consequence of ageing and it is culturally accepted
as a plausible consequence of reaching a certain age. Therefore, the mean-
ings of chronicity and the potential disruption it may entail change also
according to the age at which the illness is experienced.
The insurgence of chronic illness creates a situation of “meaning at
risk” (Bury, 1997) in which uncertainty overtakes the management of
daily routines, social relations, and self-identity. Both private and public
spaces become stages where strategies of performance are enacted to come
out or hide symptoms and to limit the potential stigma of illness. The
recognition provided by the networks of care is a crucial resource to over-
come disorientation. Outside of the orbit of medical care, social and rela-
tional resources can be found not only in the closest people, such as family,
friends, and lovers, but also in the context of activism, local communities,
16 M. PIERI

and virtual spaces. Legitimation is precious to overcome the culture of

suspicion that often surrounds chronic illness. The absence of readable
signs of impairment, the invisibility of symptoms, and the inexplicability of
pain to the external observer determine an essential unreadability of illness
(Pieri, 2019).
Recent contributions integrated the concept of biographical disruption
with perspectives that expand the individual conception of illness to new
areas. Indeed, in the last two decades, the rate of incidence of chronic ill-
ness has been steadily growing in Western countries, unveiling the impor-
tance of tackling it also as a public health issue. The COVID-19 pandemic
and the consequent health crisis showed how sociocultural factors, such as
race, gender, and sexual diversity can determine profound health inequali-
ties and lead to a higher incidence of illness.
Studies on individuals who are chronically ill from birth (Bray et al.,
2013), who fall ill at a young age (Grinyer, 2007; Monaghan & Gabe,
2015), or who develop a chronic illness due to ageing (Faircloth et al.,
2004) showed the prismatic dimension of time in chronic illness. For
example, Larsson and Grassman (2012) discuss how chronic ill people
tend to organise their sense of self, their relations, and their future projec-
tions around a “double time-table”: while attempting to manage the fluc-
tuations of illness along the 24 hours of a day, they try to situate
unpredictability in a longer period. Chronic illness here represents a con-
tinuity within the lifetime: this persistence is, after all, suggested by the
word “chronic” itself. To address the limitations of biographical disrup-
tion and expand its applicability, several authors suggested alternative for-
mulations. Williams (2000), for example, elaborated the concept of
“normal illness”: in life narratives in which tragic events and difficult con-
ditions of work are common, such as amongst low-class workers, illness
can be perceived as a normal event in the story of people with no disrup-
tive effect. In other words, in some contexts, illness is experienced as one
of the hardships of a normal life: the grade of its disruptive potential may
vary according to personal history, attitudes, and background (Pound
et al., 1998).
Larsson and Grassman (2012) advance that, when an illness is pro-
longed in time, people overcome the initial surprise with the awareness
that they need to deploy practical strategies to face the ups and downs of
their condition: the focus moves from the unexpected emergence of the
illness to the management of its uneven pace, a change from the “I-can/I-­-
cannot” to a practice of learning the “I-can-and-will-continue-to”
 2 A QUEER-CRIP PERSPECTIVE ON CHRONIC ILLNESS 17

(Toombs, 1995). Such perspectives, which come from a phenomenologi-

cal approach to disability, reveal to be particularly suitable to describe how
“living with progressive illness requires a constantly changing tool set:
with changes to bodies and environments come new skills that must be
learned to make routines possible” (Abrams, 2016, p. 7).
Other authors try to mitigate the disruptive aspect of illness into a more
comprehensive understanding of it as a moment of change. In this sense,
chronic illness would fall into the category of a “turning point”, a bio-
graphical transition: a moment diluted in time which creates change within
a coherent narrative of past and future. For example, Monaghan and Gabe
argue that “a chronic illness may be an ‘only sometimes’ problem” and
that it is important to “take account of the ‘now you see it, now you don’t’
nature of a condition that varies in terms of its symptoms, meanings and
consequences” (2015, p. 1238). Their study on young people with asthma
shows that the presence of mild symptoms or limitations is not generally
perceived as a destabilising factor but more as a consequence of bad luck:
they propose to refer to chronic illness as “biographical contingency”.
Another compelling debate is the one that questions the dichotomy
between health and illness around which Bury’s work revolves: this aspect
has been under inquiry in particular with the emergence of studies on
ableism (Campbell, 2009). Bury’s theoretical framework assumes that ill-
ness is an event that disrupts a regular life and that requires individuals to
adjust to a difficult change; on the contrary, health is indirectly considered
normalcy. As I will discuss later in the chapter, this reflects the idea of able-­
bodiedness as a desirable and normative condition which is impossible to
attend to. Moreover, illness does not necessarily cause difficulties, as
implicitly suggested by most literature: it can also be an opportunity to
restructure one’s sense of self or to make significant changes in the every-
day. Indeed, in this book, I attempt to explore the generative meanings of
illness and reflect on its political potential as an epistemological stand-
point. In this, I find important references in contributions from Feminist
Disability Studies that advance a comprehensive understanding of disabil-
ity that also consider the experiences of chronic illness. Indeed, the dis-
tinction between disability and illness is not clear, and if there is one, the
crossing line is extremely thin and fleeting. The movements for the rights
of people with disabilities have rejected the identification of illness with
disability to dismantle the medicalisation of disability and the individuali-
sation of their struggle. However, illness is a lingering issue for many (not
all) people with disability, to the extent to which some disabilities may also
18 M. PIERI

be accompanied by chronic conditions, pain, and fatigue. Wendell, for

example, speaks of a fragile distinction to be drawn between the healthy
and unhealthy disabled, pointing out that “suspicion surrounds people
with chronic illnesses – suspicion about ill/disabled we really are, how or
why we became ill, whether we are doing everything possible to get well,
and how mismanaging our lives, minds, or souls may be contributing to
our continuing illness” (2001, p. 28). Chronic illness often falls into the
category of “hidden impairments”, creating an additional set of challenges
connected to (in)visibility, coming out, and passing which are at the same
time different from visible disabilities and intrinsically imbued with the
social meanings and stigma attributed to disability.
In conclusion, we may never reach a comprehensive, encompassing,
and satisfactory definition of chronic illness that includes all the specifici-
ties and makes space for all the exceptions. However, I embrace the defini-
tion that highlights three main aspects generally shared in all experiences
of chronic illness. In the first place, chronic illness is a condition that con-
tains time in various forms: the long-span duration coexists with variable
rhythms of flare-up and silence and with a high factor of unpredictability.
Secondarily, it involves symptoms and causes impairments which can be
invisible and thus unrecognisable to the external observer, leading to dif-
ficulties in legitimation. Finally, it is intimately shaped by the sociocultural
meanings attached to disability, health, and impairment, and this connec-
tion changes the way illness is perceived, experienced, and narrated. In this
perspective, the definition of chronic illness is detached from the medical
definition and includes, for example, undiagnosed conditions that cause
prolonged disruption of everyday life, conditions that are not unanimously
recognised by the medical community (such as fibromyalgia or chronic
fatigue syndrome), and conditions that are the result of long-lasting
disabilities.

2.2   Chronic Illness and LGBTQ+ People

The appearance of studies on the experiences of illness within the LGBTQ+
population traces back to the two grand narratives on AIDS/HIV, on one
side, and breast cancer, on the other.
A rich corpus of literature on gay men with illness emerged in the late
1980s when AIDS dramatically hit Western countries. The epidemic in
Western countries spread into an “epidemic of signification” (Treichler,
1987): AIDS was consistently and intentionally associated with metaphors
 2 A QUEER-CRIP PERSPECTIVE ON CHRONIC ILLNESS 19

of immorality, deviant behaviour, and danger (at least in the public dis-
course) and it was in this category that gay men were put while their com-
munities were killed by the virus (Sontag, 1978; Watney, 1987). In these
years, research focused on denouncing such massive collective construc-
tion of homosexuality as a sexual threat (Weeks, 1996) and on how AIDS
impacted the intimate practices and the everyday lives of gay communities
(Carricaburu & Pierret, 1995; Weitz, 1991). In the following decades, the
debate on AIDS/HIV expanded beyond the connection with homosexual
men. Studies on lesbian women and their experiences with HIV are par-
ticularly important in their effort to fill the gender gap in the collective
narrative on the illness (Ciambrone, 2001; Jacobs et al., 2018; Sullivan,
2018). Others investigated the persistence of the stigma related to HIV
(Ezzy, 2000; Lipton, 2004). In recent years, the scientific advancement in
treatments transformed what once was a death sentence into a life-long
condition: in Western countries, HIV is now considered a chronic illness,
although it still carries echoes of the imaginaries arisen in the earlier
decades.
The second grand narrative that explored the experience of illness and
LGBTQ+ sexuality consisted of the narratives of lesbian women with
breast cancer. Earlier studies showed that the incidence of breast cancer
among lesbian women is higher than amongst heterosexual women, due
to a combination of factors that can contribute to higher probabilities of
developing this kind of cancer: the scarce use of contraceptive methods,
the lower amount pregnancies carried out, and a lower attendance to
screening as a consequence of discrimination in healthcare (Matthews,
1998; Rankow, 1995). These studies are based on a normative and often
essentialist perspective on lesbian women as non-mothers; however, from
the 1980s onwards breast cancer represented an important collective nar-
rative of illness within lesbian communities. Diaries and experiences of
well-known feminists significantly contributed to this: Audre Lorde
(1980), Susan Sontag (1978), and Eve Sedgwick (1999) wrote relevant
biographical accounts in which the embodied experience of cancer is inter-
laced with politics and activism. Lorde’s work is particularly important
because it sheds light on the meanings of intersectionality through illness:
Lorde insists on her being black, lesbian, activist, and ill at the same time
and reclaims the importance of transforming the individual experience
into a collective story of feminist resistance. These contributions consti-
tute in some ways archetypical narratives of illness experienced by lesbian
women. In recent years, the field has expanded both to include narratives
20 M. PIERI

of cancer by trans* and non-binary persons and intersections in the Latino

population or older LGBTQ+ people (Boehmer & Elk, 2015; Cerezo
et al., 2021).
In a short time, both HIV and breast cancer turned from life-­threatening
illnesses to chronic illnesses and are significant of a general tendency in
Western countries, in which illnesses are progressively turned into chronic
illnesses, thanks to the advancement of knowledge in medicine.
In the first decade of the century growing interest has been devoted to
LGBTQ+ people and their health, following three main directions: the
access to healthcare; the impact of illness in everyday life for specific popu-
lations (lesbians; gay; trans*); the need to rethink health from a queer
perspective.
The first focus of interest is fair, equal, and free access to healthcare for
LGBTQ* people as a controversial topic which raises questions of inequal-
ities in health, structural heteronormativity, and intersectional compo-
nents that may affect the quality of life. Research recognises the
heteronormative foundations of healthcare regimes, that function around
a supposedly universal heterosexual, cisgender, monogamous ideal patient
(Bjorkman & Malterud, 2007; Eliason & Schope, 2001; Horncastle,
2017). The implications of this deep structural conformation are manifold
(Zeeman et al., 2019). For example, LGBTQ+ patients adopt different
strategies to avoid disclosure unless needed, for fear of discrimination, or
because they believe it is not necessary information. Women and racial
minorities are particularly vulnerable in coming out choices because of the
overlapping of gender discrimination, homo-transphobia, and racism. As
Austin (2013) and St Pierre (2012) document, concerns regarding disclo-
sure of sexual orientation/gender identity discourage access to healthcare
when not strictly necessary. Moreover, they inhibit attendance in screen-
ing programmes, regular therapies, or even access to emergency services
(van Dam et al., 2001). As a consequence, LGBTQ+ people are more
exposed to late treatments, missing diagnoses, and negative outcomes of
illness.
The difficulties encountered in accessing healthcare are also a relevant
factor for the increase of mental health issues, use of substances, and sui-
cide attempts within the LGBTQ+ population, as a vast literature signal
(Link & Phelan, 2006; Valdiserri et al., 2019). The impact of healthcare
disparities on mental health took a toll, especially during the COVID-19
pandemic when many LGBTQ+ people faced additional challenges related
to insecurity, confinement, and domestic violence (McGowan et al., 2021).
 2 A QUEER-CRIP PERSPECTIVE ON CHRONIC ILLNESS 21

Data coming from studies on healthcare professionals show that the

education of healthcare staff on LGBTQ+ is a crucial field to improve
services and access. Indeed, it is not common to encounter training pro-
grammes or specific curricula about LGBTQ+ issues in the formative pro-
cess of healthcare professionals: this lack contributed to the perpetuation
of stereotypes and discrimination within healthcare systems (Newsom
et al., 2022; Pinto et al., 2022).
The second focus of interest in literature comes from studies that inves-
tigate the impact of chronic illness on the everyday life of specific groups
within the LGBTQ+ spectrum. For example, early studies on lesbian
women show the relevance of networks of care in the management of
chronic illness and advance that the difficulties of living with a stigma
make lesbian women more resilient when they face the challenges of illness
(Axtell, 1999; Wilton, 1997). Research focuses on how gender, sexuality,
and illness intersect in creating processes of self-identification for lesbian
women, for example in the case of cancer (Boehmer & Elk, 2015), rare
illnesses (Munro et al., 2022), and chronic pain (Walden, 2009).
Similarly, studies conducted on gay men investigate the daily experience
of chronic illness, with particular attention to ageing men (Perlman &
Drescher, 2005; Genke, 2004). It is interesting to note how the attention
given to HIV in the gay communities generates collective responses of
devaluation when their members fall ill with a non-HIV illness (Courtenay-­
Quirk et al., 2006; Smit et al., 2012).
While most studies make an indistinct use of the category “LGBTQ+”,
they focus almost exclusively on lesbian women, gay men, and on bisexual
persons only in a few cases. The narratives of trans* persons, intersexual,
asexual, non-binary, and queer people with chronic illness remain mostly
invisible (Nowakowski et al., 2020). The experience of trans* people in
healthcare is mainly explored in the declination of the pathologisation/
de-pathologisation debate: studies on the access of trans* people to
healthcare exist but focus almost exclusively on the aspects related to the
hormone therapies and gender-affirmation medical processes (Hilário,
2019; Lombardi & Banik, 2015).
It is also with this preoccupation that some authors have recently called
for the need for queer healthcare and our understanding of the relationship
with medical systems. This third body of literature insists on the hetero-
normative foundations of biomedicine that determine who counts as
healthy or ill, what is diagnosed or dismissed, and what is considered
abnormal or monstrous. The proposal is thus to rethink “how
22 M. PIERI

interventions into the body can fully engage differences rather than aim
for the establishment or restoration of a normative mode of being in the
world, what counts as knowledge in these interventions, and which meth-
odologies produce the most fruitful openings for such critical explora-
tions” (Dolezal et al., 2021, pp. 8–9). The heteronormative structure that
permeates healthcare practices can be queered through the destabilising
approach of deconstruction to “destabilise, deconstruct, challenge or re-­
imagine dominant binaries, discourses, normative categories or moral ide-
als, structures, relations and practices in health and healthcare” (Zeeman
et al., 2014, p. 6). Accepting the challenge involves to rethink not only
how we frame chronic illness but also how chronic illness shifts the mean-
ings of heteronormativity and able-bodiedness within and outside the
healthcare system.

3  Against Normalcy: Crip Theory, Disability,

and Illness

3.1   The Emergence of Crip Theory

In disability studies, sexuality is often absent and LGBTQ+ experiences are
rarely mentioned. The predominant models of interpretation, in particular
the social model and the Feminist Disability studies, offer relevant reflec-
tions on disability and the way it is related to gender, class, and social
exclusion. However, they seldom constitute a reference for the study of
chronic illness because they tend to focus more on physical impairment
than on other aspects usually part of the experience of illness, such as invis-
ibility, pain, and mental health conditions. Sexuality and intimacy in gen-
eral and, in particular, the lives of LGBTQ+ persons with disabilities are
often absent as well, despite important exceptions (Brownworth &
Raffo, 1999).
A fruitful way to engage both with chronic illness and LGBTQ+ lives is
through the insights provided by crip theory, which emerged in part as a
responsive reaction to the lack of engagement between critical disability
studies and queer theory. “Crip” comes from “cripple”, a term used as an
insult against disabled people (McRuer, 2006). The choice of using “crip-
ple” to base a theory on disability openly recalls how queer theory was
born: appropriated and re-signified, the term changed from being a pejo-
rative to a proud political claim as “a site of collective contestation”
(Butler, 1993). Crip theory emerges to:
 2 A QUEER-CRIP PERSPECTIVE ON CHRONIC ILLNESS 23

claim critically disabled identities and to position them as permanently con-

testatory conditions”. To “claim [critical] disability”, it would seem, is to
reject the cultural devaluation of disability and to recognize disability as a
vital force that constantly reshapes culture despite ableist norms that would
relegate it to a supporting role. […] Queering entails rejecting cultural
devaluation and reshaping heterosexist norms, and claiming disability entails
bringing out the multiple differences that are compelled to pass under the
sign of the same. (McRuer, 2006, pp. 96–97)

Crip theory expands the way disability is interpreted and deconstructs

the meanings ascribed to able-bodiedness, impairment, and ability. In
other words, “claiming crip, then, can be a way of acknowledging that we
all have bodies and minds with shifting abilities, and wrestling with the
political meanings and histories of such shifts” (Kafer, 2013, p. 13). Crip
theory revolves around four main pillars: the critique to normalcy; able-­
bodiedness as a system of compulsion; the centrality of failure as a site of
resistance; intersectionality. I will briefly discuss them since they constitute
a core fundament for the reflections outlined in this book.
In the first place, crip theory proposes a critical engagement with able-­
bodiedness as a form of normalcy. Despite the resistance it may trigger, the
recognition of how systems of compulsory norms operate is deemed by
McRuer (2006) as decisive to maintain a constant state of political contes-
tation. The crip perspective thus engages with lessons inherited by
LGBTQ+ activism and the alliance with other movements and theories.
“To crip” becomes a verb that denotes this posture of anti-normativity
resounding with queer practices: “both queering and cripping expose the
arbitrary delineation between normal and defective and the negative social
ramifications of attempts to homogenize humanity” (Sandahl, 2003, p. 37).
Secondarily, crip theory denounces able-bodiedness as a system of com-
pulsion connected to heteronormativity. In her influential text from 1981,
Adrienne Rich speaks of ‘compulsory heterosexuality’ (1980) as a system
which equates heterosexuality to normalcy: being the expected standard,
heterosexuality is not even considered a possible subject of criticism.
Therefore, since it is everywhere, it is nowhere. Later on, queer scholars
opted for the use of the concept of ‘heteronormativity’ to indicate the
pervasive norm that reproduces the alignment between sex, gender, and
sexual orientation (Butler, 1993). McRuer (2003) inserts his analyses in
this genealogy to show the parallelism between heteronormativity/able-­
bodiedness and homosexuality/disability. While heterosexuality and
24 M. PIERI

able-­bodiedness represent the normal option, homosexuality and disabil-

ity equal deviance from the norm by difference or subtraction. The two
systems work together and similarly in producing compulsory rules of
normalcy. They are, by all means, systems of compulsion:

the system of compulsory able-bodiedness, which in a sense produces dis-

ability, is thoroughly interwoven with the system of compulsory heterosexu-
ality that produces queerness: […] in fact, compulsory heterosexuality is
contingent on compulsory able-bodiedness, and vice versa. (McRuer,
2006, p. 2)

Systems of compulsion are based on the presumption that normalcy can

be defined through a supposedly natural standard. This implies that if the
normal can be defined, those who deviate from the norm may also be eas-
ily detected and their existence is considered less valid. Indeed, disability is
often narrated as a defect, a tragedy, or a failure. Moreover, systems of
compulsion do not erase alternatives, but they operate by reinforcing the
stigma associated with deviance. Symbolic and material exclusion rein-
states how undesirable it is to misalign with the norms. Also, they are
based on binary structures: the division between normal/deviant is repro-
duced in other declinations, such as good/bad, hetero/homosexual,
healthy/ill, able-bodied/disabled, male/female, white/non-white, rich/
poor. The binary structure creates a fundamental reassurance about the
social order and, hence, reinforces the sense of belonging or exclusion. In
this logic, the most dangerous act is not to be deviant but to be in-between
and to fluidly navigate between dichotomies: this is a crucial point in the
discussion of chronic illness, as I will discuss later in the chapter. Finally,
whilst able-bodiedness and heteronormativity reify identities as mono-
lithic and unchangeable, both crip and queer perspectives are based on the
fluidity of identification and potential expansiveness of the term. The pri-
vatisation of deviance that sends queers back to their bedrooms and locks
crips into their homes (McRuer & Wilkerson, 2003) is sustained by the
fundamental function of social reassurance that systems of compulsion
operate within communities. Not only: it is also a way to avoid taking col-
lective responsibility for inequalities and minimise the costs of social inter-
vention, a tendency that neoliberalism and capitalism showed in particular
in recent years (McRuer, 2018).
 2 A QUEER-CRIP PERSPECTIVE ON CHRONIC ILLNESS 25

A third important pillar of crip theory is its focus on the political poten-
tial of failure. McRuer paraphrases Butler’s definition of heterosexuality as
a comedy:

Heterosexuality [able-bodiedness] offers normative […] positions that are

intrinsically impossible to embody, and the persistent failure to identify fully
and without incoherence with these positions reveals heterosexuality [able-­
bodiedness] itself not only as a compulsory law but as an inevitable comedy.
[…] Able-bodied identity and heterosexual identity are linked in their
mutual impossibility and in their mutual incomprehensibility. (2003, p. 93)

If the art of failure is an intrinsic part of queer politics (Halberstam,

2011), it is also an important aspect of crip theory to the extent to which
it represents a starting point to overcome oppression. The aspect of “inev-
itable comedy” opens for an imaginative process in which crip and queer
together represent “words to help forge a politics” (Clare, 1999, p. 70).
Therefore:

seeing disability as political, and therefore contested and contestable, entails

departing from the social model’s assumption that ‘disabled’ and ‘non-­
disabled’ are discrete, self-evident categories, choosing instead to explore
the creation of such categories and the moments in which they fail to hold.
Recognizing such moments of excess or failure is key imagining disability,
and disability futures, differently. (Kafer, 2013, p. 10)

Crip theory recognises that all those bodies (or body-minds) that fail to
be considered normal are involved in a common struggle: their impor-
tance and their value consists in their failure because it is through the
cracks that they show that able-bodiedness is nothing more than a com-
edy. This perspective mitigates the representations of disability as victim-
ised and pitiful and offers a new centrality to disabled individuals as subjects
of choice. Claiming that able-bodiedness is a normative tyranny that
regards everyone (both the able-bodied and the disabled) equals stating
that disability is also an issue that concerns all society (both its able-bodied
and its disabled members), as Kafer notes: “rethinking our cultural assump-
tions about disability, imagining our disability futures differently, will ben-
efit all of us, regardless of our identities” (2013, p. 14).
Finally, crip theory engages with intersectionality theory and a line of
reflection which analysis structural racism, ableism, heteronormativity and
other forms of oppression as intimately connected. It insists on the
26 M. PIERI

necessity of an intersectional theoretical work capable of including the

workings of ableism within the greater picture of other systems of oppres-
sion. Such shift, however, may be difficult for disability studies and, as
Kafer affirms, for the disabled community itself, because it requires the
ability to acknowledge that “part of the problem […] is the assumption
that there is only one side to the question of disability and that we’re all
already on it” (2013, p. 19).
Critique to able-bodiedness, valorisation of failure, intersectionality:
through these orientations, crip theory offers a powerful set of tools to
engage critically with the meanings of disability. How it is also useful to
read chronic illness is at the centre of the next part.

3.2   Cripping Chronic Illness

Crip theory does not address specific attention to chronic illness; however,
authors like Kafer (2013) and Patsavas (2014), amongst others, include
chronic illness in a broad understanding of disabling conditions and politi-
cal similarities. Starting from them and valuing the contributions to
chronic illness discussed in the first part of this chapter, I aim to carve out
a framework for a crip reading of chronic illness. Although I am conscious
of the risks of engaging in such an operation, I believe it is necessary to
interrogate the (supposed) differences between disability and chronic ill-
ness: the aim is not to produce more definitions or more categories, but to
dig into the blurred areas that make some chronic illnesses also disabilities
and other disabilities not at all comparable to chronic illness. The final
scope is to expand the possible investigation of disability, acknowledging
that “how one understands disability in the present determines how one
imagines disability in the future; one’s assumptions about the experience
of disability create one’s conception of a better future” (Kafer, 2013, p. 2).
The premise for a crip theory of chronic illness is that the act of crip-
ping offers more tools of interpretation than means of description. As
such, crip theory shall be considered also as an epistemology—what
Patsavas calls a cripistemology (2014). Deploying this lens of understand-
ing, I suggest three possible ways to crip chronic illness: problematising
(in)visibility; valuing pain; contesting medicalisation.
In claiming the need to problematise (in)visibility, I rely on the abso-
lute centrality that visibility has in the construction of normalcy: the sepa-
ration between the normal and the deviant lies on the premise that all
subjects are visible and recognisable. Therefore, “the meaning of
 2 A QUEER-CRIP PERSPECTIVE ON CHRONIC ILLNESS 27

disability, like the meaning of illness, is presumed to be self-evident; we all

know it when we see it” (Kafer, 2013, p. 4). The assumed self-evidence of
illness plays a part in reassuring social environments about the readability
of what is not normal. However, chronic illness escapes this parallel: in
fact, most chronic illnesses do not show visible symptoms or readable
forms of impairments. Some chronic illnesses are evident only in certain
moments of flare-up, whilst others always remain invisible. Because they
are not clearly disabled, chronically ill persons can pass as able-bodied,
with all the contradictions it implies. Here lies a precious link to the
LGBTQ+ experience: the debate on passing is particularly important for
lesbian and trans* persons, as Samuels (2003) outlines, but also the black
and Latino communities. Being able to pass means having access to the
privileges destined for those that are considered normal; in some contexts,
the privilege of being perceived as part of the normal majority protects
from violence, assaults, and discrimination (Brune & Wilson, 2013).
However, passing is traditionally interpreted as a form of appropriation of
the privileges of the dominant and abandoning the political struggle of the
oppressed. In the context of identity politics, blending into the majority is
often seen as a dangerous disempowerment of political claims for diversity.
As I argue elsewhere (Pieri, 2019), passing and invisibility can also be
understood as strategic means to disrupt dichotomies from within the sys-
tem. In some cases, chronic illness can be made visible through processes
of coming out or can be kept invisible by choice: therefore, just as being
LGBTQ+ can be made visible through repeated performances of coming
out, being chronically ill can be made legible in those contexts in which it
is considered important or safe. It can, on the contrary, be kept in the
closet: in these cases, it is not a failure but a powerful strategy of resistance.
The multiple aspects related to passing complicate the dualistic para-
digm that equates visibility to affirmation and invisibility to silence and
oppression. As Samuels shows, the multiple ways in which invisibility can
be inhabited and performed are a potential terrain in which we can con-
struct intersectional readings for disabled, queer, and other marginal sub-
jectivities—such as the mestizas (2003, p. 250). What crip theory indicate
is that visibility and invisibility are performative variables across the line of
time and identity: in a similar context, one can be visible as chronically ill
but not as LGBTQ+ whilst deciding to make visible their identity but not
their illness in a different environment. Therefore, it is possible to decon-
struct practices of (in)visibility enacted by chronic ill people not just as
chronically ill people, but also and always also as LGBTQ+, heterosexuals,
blacks or young.
28 M. PIERI

A second fruitful way to deploy a crip reading of chronic illness is to

value pain. Suffering is a central part of the construction of disability and
illness but has often been dismissed as an unsettling factor of confusion
and unreliability. On the contrary, pain represents a privileged site from
where to observe how the individual and the collective meanings of dis-
ability and illness are formed. Crip epistemology brings back to centrality
the embodied experience of pain, in particular when it is not sustained by
visible legitimation of the experience of suffering. Pain has been relegated
outside the contributions from the social and the medical model of dis-
ability, often interpreted as a sign of weakness to be cured or denied at all
costs. However, when chronic pain and fatigue are denied a space for
political struggle, “our collective ability to conceive of, and achieve, a
world which does not disable is diminished” (Crow, 1996, p. 60).
Regarding pain as an important standpoint of knowledge and a political
resource exposes compulsory able-bodiedness and the cultural construc-
tions around suffering. Cripping chronic illness thus means recovering the
importance of suffering and the centrality of the pain we feel, not just as a
bodily manifestation but also as a social pain caused by exclusion, dis-
missal, and violence.
Finally, cripping chronic illness inevitably entails a radical critique of
medical knowledge and the power of medical authority over disabled and
ill persons. What becomes central is not the medical definitions of chronic
illness but the experience of illness as a form of displacement from nor-
malcy. As it will emerge in the empirical research I discuss in the next
chapters, the medical definition of chronic illness often does not coincide
with the experience: the debates on the actual existence of conditions such
as Chronic Fatigue Syndrome, the dismissal of fibromyalgia or vulvodynia
as a real illness, and the stigma that often comes with undiagnosed condi-
tions demonstrate that the medical knowledge alone does not provide
resources to understand the complexity of our embodied experiences.
People with disability and chronic illnesses, just like LGBTQ+ people,
similarly suffer the consequences of medicalisation and face the constant
struggle to be recognised and acknowledged by medical power. In this
sense, experiences of chronic illness are part of experiences of disability
(and vice versa) because they share a “collective affinity”: they “can all be
discussed in terms of disability politics, not because of any essential simi-
larities among them, but because all have been labelled as disabled or sick
and have faced discrimination as a result” (Kafer, 2013, p. 11).
 2 A QUEER-CRIP PERSPECTIVE ON CHRONIC ILLNESS 29

Problematising (in)visibility, valuing pain, and contesting medicalisa-

tion: they are three proposals to crip chronic illness that do not mean to
be exhaustive but are generative of new ways to critically think about dis-
ability, health, and illness. However, they need to be understood in a larger
frame in which a fourth element plays a fundamental role: time.

4   Queer-Crip Temporalities: A Proposal

4.1   Chrononormativity: The Obligation to (Re)produce,

Be Happy, and Get Well
Time is a function of normalcy and regulates every aspect of human life: in
other words, we are time and time is everywhere. Therefore, the relations
we establish with time determine the relations with the social environment
in which we live. Through the organisation of time, universality and lin-
earity also organise social and individual living around principles of nor-
malcy. Freeman coins the term “chrononormativity” to describe the link
between time and normativity: it refers to the “use of time to organize
individual human bodies toward maximum productivity” (2011, p. 3). In
her perspective,

Temporality is a mode of implantation through which institutional forces

come to seem like somatic facts. […] We achieve comfort, power, even phys-
ical legibility to the extent that we internalize the given cultural tempos and
timelines. (Freeman, 2007, p. 160)

Time is so ingrained in cultural definitions that the way we relate to it

defines our legibility and acceptability within a social group, from the
micro-scale of interpersonal relationships to the macro-scale of state regu-
lations. In other words, it represents the pace of normalcy, as a socially
constructed set of representations and narratives that shapes the boundar-
ies of liveable lives. The rhetoric about time and its deployment in society
is always connected to a political inflexion: as such, we can speak of “chro-
nopolitics” to define how power and oppression are also exercised through
time. I intend to focus here on three aspects of chrononormativity that are
particularly important for the present study and will provide bearings for
the analysis of the empirical data: reproduction, productivity, and
happiness.
30 M. PIERI

The first aspect of chrononormativity is linked to the social expectation

towards reproduction as both a regulatory practice of society and a gate of
access to full citizenship. From a temporal perspective, reproduction rep-
resents the connection between the past and the future and a guarantee
that linear genealogies will continue to exist. However, “reproductive
time and family time are, above all, heteronormative time/space con-
structs” (Halberstam, 2005, p. 10): the expectation of reproduction is
moulded on the heterosexual (and gender-normative) couple model. For
the temporal principle of linearity, life is supposed to follow a determined
path: we are supposed to be born from a heterosexual reproductive couple
that will educate us through childhood and adolescence; then, we are
expected to reach adulthood, reproduce within a heterosexual couple,
educate our offspring, and die. These steps are the contribution we are
expected to provide to the common future of humanity and the survival of
our community: heteronormativity is reproduced infinite times through
performative repetition and through the demand to attend to repronor-
mativity, that is:

the assumption, expectation and cultural demand that biological procre-

ation should occupy the centre-ground of the social formation, that inti-
mate relationships, sexuality and the wider organisation of the social should
be driven by, and structured around, a naturalised notion of a primary, fun-
damental procreative imperative. (Roseneil et al., 2013, p. 3)

The procreative norm is fundamental in the regime of access to full citi-

zenship since it encourages reproduction amongst those who are consid-
ered “good citizens”, whilst discouraging reproductive politics amongst
those who deviate from the heterosexual and gender normative couple.
Good citizens are properly procreative in the proper time frame, which
coincides with the cultural boundaries that limit adulthood: not too soon,
not too late.
The second aspect of chrononormativity is centred on productivity.
The separation between work and leisure, production and fun, activity and
sleep, is normatively prescribed and its maintenance constitutes a recipe
for success. The consecration of linear time as dominant served the pur-
poses of Modernisation and enhanced the development of capitalism and
colonialism in Western societies. Overcoming the natural state meant
being able to exploit human forces to produce more and produce every-
where. Through processes of abstraction, de-contextualisation, and
 2 A QUEER-CRIP PERSPECTIVE ON CHRONIC ILLNESS 31

rationalisation of time, modern Western countries created a system in

which time served human rationalism and economic production.
Nowadays, the way capitalism controls time goes well beyond the mere
division of labour and invests in all aspects of society. Every part of the day
and every phase of life are regulated through their relation to productive
work. This division of time is impregnated with racism, sexism, and able-
ism. Chrononormativity hence works as a conjuncture of different systems
of compulsion in the construction of socially acceptable citizens who are
reproductive, productive, and respectful of the social rhythms.
The third interesting aspect of chrononormativity is the expectation to
have a good life and pursue happiness: the apparent consensus over what
happiness is (or should be) formed through the conjunction of the norma-
tive imperatives linked to reproduction and productivity. As Ahmed points
out, the science of happiness is based on a performative tautology: “by
finding happiness in certain places, it generates those places as being good,
as being what should be promoted as good” (2010, p. 6). The duty to be
happy insists that happiness lies in symbolic places where we are expected
to look for it: for example, marriage, parenting, and success. This concep-
tion reassures us over the unpredictability of life and reminds us that if we
try hard we can find a purpose in life: this way, “happiness becomes a ques-
tion of following rather than finding” (ibid., p. 32). Achieving happiness
means being well oriented in time towards the directions that are consid-
ered inherently right and is the result of the ability to stay in line with this
orientation without deviations:

The unhappiness of the deviant has the powerful function as a perverse

promise (if you do this, you will get that!), as a promise that is simultane-
ously a threat (so don’t do that!). Happiness scripts are powerful even when
we fail or refuse to follow them, even when desires deviate from their lines.
In this way, the scripts speak a certain truth: deviation can involve unhappi-
ness. (ibid., p. 91)

The happiness duty is also declined towards the expectation to take care
of our well-being. Western contemporary societies are impregnated with
the imperative of self-care that increasingly pushes citizens to be actively
hopeful and optimistic (Kim & Shalk, 2021). The pressure over taking
care of our bodies and minds is pervasive and takes the form of a moral
obligation, to the point of becoming a “wellness syndrome” (Cederström
& Spicer, 2015). It is an ideology sustained by the remarkable growth of
32 M. PIERI

the industry connected to wellness, fitness, and beauty; the expansion of

services linked to mindfulness, meditation, and therapy; and flourishing
economies based on self-improvement, bio-technologies, and medical
optimisation. If the happiness duty celebrates the normative paths of look-
ing for a good life in a certain way, healthism relates a good life to the
precepts of health and able-bodiedness. The imperative of healthism
depreciates the non-conforming, such as disabled, overweight, ill or
depressed people, and condemns unhealthy practices, like smoking, drink-
ing alcohol, or eating irresponsibly. It charges individuals with the respon-
sibility of trying to get better and of the potential failures in the process.
The narrative of the individuals as creators of their destiny impedes iden-
tifying the social causes of oppression and put all the burden on the indi-
vidual instead of promoting collective improvement. In a contemporary
version of the Latin Homo Faber, everyone is expected to do any effort
possible to feel better, live better, and be better. The consequences of this
logic are the de-politicisation of choices and the individualisation of
responsibility:

Such depoliticization is absolutely central to the wellness syndrome, whereby

happiness and health become the fundamental criteria for what passes as a
moral life. Morality, here, is not just to do with your relation to other peo-
ple; it is concerned with the relation to yourself, and especially to your own
body. (Cedeström & Spicer, 2015, p. 30)

Within this regime, disability and illness can be overcome through the
right attitude or an extraordinary love for life—as it happens, for example,
in the celebration of supercrips. Also, they are the result of an unhealthy
lifestyle that can be either prevented through responsible choices or over-
come with a positive attitude.
Through the insistence on reproductive, productive, and healthiest
paradigms, chrononormativity determines specific expectations for each
age of life. They are particularly exacerbated in the entrance to adulthood:
individuals are considered adults when they can have an autonomous rela-
tional life (coupledom and parenting), an independent income (job), and
the capability to take care of their wellness (health and happiness). The
ability to fulfil the normative path of adulthood is directly connected to an
increased possibility to enjoy full citizenship and access to individual rights.
Therefore, chrononormativity does not just constitute a way of organising
time: it is a means of exercising power and oppression over some catego-
ries of people in favour of the reproduction of “good citizens”.
 2 A QUEER-CRIP PERSPECTIVE ON CHRONIC ILLNESS 33

4.2   Too Much of the Wrong Thing at the Wrong Time:

Queering Kronos
Queer theories are particularly attentive to the normative dimension of
time and have produced several significant contributions that help us in
imagining different times. The analysis that Halberstam (2005) carries out
on queer young subcultures is a crucial piece of this discussion: by identi-
fying how the deviation from normative paradigms of sexuality, reproduc-
tion, and kinship changes biographical trajectories, Halberstam shows
how LGBTQ+ people live outside chrononormative temporalities almost
by default. In this sense, being queer has to do with doing “too much of
the wrong thing at the wrong time” (Kafer, 2013, p. 35). Or, as McCallum
and Tuhkanen (2011) advance, it is a way to live in the rhythms of Kairos
(the moment of opportunity) more than in the pace of Kronos (the regular
time), that is, spending actual time in activities and relationships that seem
pointless or that are considered not proper for an adult.
At the same time, attending to queer temporalities involves also a pre-
occupation with queer futurities. From the negative queer drive described
by Lee Edelman in the famous book No Future (2007) to the debates on
queer reproduction, there is a rich debate over what is there in queer
futures and how can this be politically relevant. Ahmed, for example
(2010), discusses the figure of the “unhappy queers” to recognise the
importance of shared queer historical genealogies: while the promise of
happiness directs us towards straight lines, LGBTQ+ people choose a
deviation from the predicted grid, a deviation that takes to a supposedly
unhappy future but that holds an important potential as a political form of
resistance. Queer orientation to the future is characterised by the insis-
tence on opting out of normative paths while being aware of the unhappi-
ness that can be related to normalcy. The inability (or the choice not) to
follow the normal temporal line is at the basis of the construction of
queerness as a failure. Following this perspective, Halberstam speaks of
“the queer art of failure”:

There is something powerful in being wrong, in losing, in failing, and […]

all our failures combined might just be enough, if we practice them well, to
bring down the winner. […] The concept of practicing failure perhaps
prompts us to discover our inner dweeb, to be underachievers, to fall short,
to get distracted, to take a detour, to find a limit, to lose our way, to forget,
to avoid mastery. (2011, p. 121)
34 M. PIERI

The queer art of failure is about doing all of this as a collective project,
not incorporating the individual guilt that comes from the (re)productive
and compulsory happy norms but overturning them in unexpected ways.
Being unproductive, unhappy, or consistently failing represents possible
ways out from the chrononormative path and constructs a future in which
there are alternatives to the linearity of time.
In many ways, this debate resonates with a parallel debate on the tem-
porality of disability and the centrality of time in illness, as I have previ-
ously explored. Time is the semantic category most used to refer to
symptoms (intermittent, acute, frequent), duration (chronic, constant),
onset (congenital, acquired, sudden), and prospects (diagnosis, progno-
sis): the language that constructs disability and illness is mainly temporal.
From a crip perspective, the notion of chrononormativity already necessar-
ily includes heteronormativity and able-bodiedness: the expectations
regarding reproduction, productivity, and happiness already implicitly pre-
sume able-bodiedness since they are all based on the cultural perception of
disability as an exception.
Therefore, chrononormativity revolves around the organization of het-
eronormative and able-bodied time to produce normalised individuals in
all stages of life, from birth, through adulthood, to death. Inevitably, it is
based on forms of symbolic violence that work through “changing the
future by manipulating the present” (ibid., p. 27).

4.3   Can We Queer and Crip Time?

If the past is deformed by crip nostalgia for able-bodiedness and the future
moulded on the hope for a cure, how can we crip (queer) time, then? The
answer to this quest is oriented to create connections between queer tem-
poralities as failure and crip time as “liminal temporality, a casting out of
time” (Kafer, 2013, p. 36). The practice of imagination goes beyond a
mere critique of normalisation and offers directions for crip time.
In the first place, crip temporalities are also examples of times outside
the chrononormative directions: times that run at a different pace, an
alternative speed. Disability and illness imply that more time is needed to
do common activities, or that the time that is considered right to do some-
thing is calculated on the able-bodied standard. Crip temporalities reveal
the able-bodiedness that saturates all cultural definitions of time and
unveils the diversity of definitions that can refer to slowness, rapidity, rest,
work, success, and leisure. Kafer also insists on the political importance of
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 Hän piti toisella polvellaan ruorinvartta kiinni pysyäkseen
määrätyssä suunnassa, tarttui kivääriinsä ja laukaisi jonnekin valaan
suuren evän taakse, missä arveli sydämen olevan. Hänen näin
puuhatessaan koira älysi, että jotakin mielenkiintoista oli tekeillä,
hypähti pystyyn, laski etukäpälänsä purren laidalle ja haukkui
vimmatusti tuota outoa mustaa olentoa, joka kieriskeli aalloissa.

Gardnerin hämmästykseksi ei hirviö itse vastannut millään tavalla

tähän laukaukseen, mutta heti alkoi juuri sen kyljen alla hurja liike.
Jokin siellä rupesi vimmatusti pieksemään vettä, ja peto,
käännähtäen ympäri, katseli sinnepäin perin levottomana ja
huolestuneena. Se silitteli jotakin pyrstöllään ikäänkuin sitä
rauhoittaakseen, ja silloin Gardner huomasi, että laukaus oli osunut
pedon poikaseen. Nyt hän tunsi katumusta. Jos hän olisi nähnyt
poikasen, ei hän olisi ampunut emoa eikä pienokaista. Hän ei ollut
kevytmielisen julma, ainoastaan ajattelematon. Muutaman
silmänräpäyksen hän tuijotti epäröiden. Sitten hän, päättäen
poikasen liikkeistä, että se oli saanut kuolettavan haavan, katsoi
parhaaksi tehdä lopun sen kärsimyksistä. Tähdäten erittäin
huolellisesti hän laukaisi taas. Pamaus kajahti kovaa tuskin sadan
jalan päässä olevan saaren kallioseinämästä.

Tällä kertaa Gardner oli ampunut hyvin. Ennenkuin laukauksen

kaiku oli häipynyt, makasi valaanpoikanen hiljaa ja alkoi sitten hyvin
hitaasti painua. Nyt tuli muutaman hetken hiljaisuus, jota häiritsi vain
ruskean koiran kiihkeä haukunta. Valas ui hitaasti puolikaaressa
poikasensa ruumiin ympäri ja pääsi nähtävästi selville siitä, että se
oli kuollut. Sitten se loi pienet silmänsä venettä kohti. Tätä kesti vain
silmänräpäyksen, mutta sittenkin ennätti Gardner käsittää tehneensä
kauhistuttavan virheen. Vaistomaisesti hän suuntasi veneen tuota
kallioista saarta kohti.
 Kun hän kiristi ruorinvartta toiselle puolelle, samalla hellittäen
purjetta, näki hän veden kiehuvan valaan mustan ruumiin ympärillä.
Valas oli hyvinkin sadan jalan päässä, mutta sen ryntäys oli niin
kauhistava, että näytti siltä kuin se samassa hetkessä saavuttaisi
hänet. Ulvahtaen koira loikkasi kauvas keulaan. Kun vene sillä
hetkellä oli sivuttain tuohon kauheaan hyökkäykseen, pysyi Gardner
istumassa paikoillaan ja ampui vielä epätoivoisen laukauksen
suoraan lähestyvää tuhoa kohti. Yhtä hyvin hän olisi voinut ampua
hernepyssyllä!

Pyssy putosi hänen jalkoihinsa. Samassa hetkessä tuntui siltä,

kuin pikajuna olisi törmännyt veneeseen. Se ihan nousi vedestä, ja
koko toinen sivu meni mäsäksi. Sillä välin Gardner tunsi, kuinka
hänet lennätettiin suoraan yli puomin. Pudotessaan alas hän kuuli
ruskean koiransa vinkaisevan.

Pelastaakseen sotkeutumasta purjeeseen, joka vettä viistäen

lepatti hänen päällään, hän sukelsi ja kohosi pinnalle noin
viidentoista jalan päässä. Tätä sukellusta samoin kuin purjeen
suomaa silmänräpäyksen piiloa hän epäilemättä sai kiittää
hengestään. Hän oli taitava uimari ja lähti heti saarta kohti
kilpavauhtia, uiden matelevin ottein pää enimmäkseen veden alla.
Valas ei ensin huomannut hänen pakoaan. Onneton koira oli
haukkumisellaan kiinnittänyt sen huomion, ja tämän se tempasi ja
murskasi sinä hetkenä kun se paiskautui veteen. Sitten kohdistaen
raivonsa venehylkyä vastaan se oli repinyt ja ruhjonnut sen
sytykepuiksi tarttuen siihen suurilla leuoillaan ja pudistellen sitä kuin
koira rottaa. Tämän suoritettuaan se oli kääntynyt saarta kohti, ja
sen kamalat silmät osuivat uivaan mieheen tämän halkoessa aaltoja
matkalla rantaan päin.
 Sen ryntäys oli kuin torpedon lento, mutta Gardner tarttui jo
vimmatusti kallion reunaan. Tämä oli muodoltaan kuin noin
kahdentoista tuuman levyinen hylly ja ihan vesirajassa. Mies
ymmärsi, että se ei ollut mikään turvapaikka. Mutta jotakuinkin
miehen korkeudella vedestä oli kalliossa syvennys, omituisesti
kovertunut kuin kuvapatsasta pidelläkseen. Epätoivoisen notkeasti
hän ponnahti tähän pienoiseen pakopaikkaan vetäen jalat ylös
perässään ja painautuen mahdollisimman litteänä komeroon.
Samassa hetkessä hän oli tukehtua vaahtoon ja ryöppyyn, kun
hänen takaa-ajajansa ruho kumeasti jymähtäen iski kallioon aivan
hänen jalkainsa alla.

Gardner värisi ja ponnisteli läähättäen tavoittaakseen henkeä

keuhkoihinsa. Hän oli uinut monessa kilpailussa, mutta ei koskaan
tällaisessa. Varovasti kääntyen ja pysyttäytyen litteänä kuin
simpukka syvennyksen seinää vasten, hän tuijotti alas peläten, että
vainooja yrittäisi toista tällaista hurjaa hyppyä paremmalla onnella.

Mutta valas ei näyttänyt haluavan koettaa sitä uudestaan.

Törmäyksen tuottama täräys oli ollut kauhea ja varmaankin vähällä
pusertaa hengen valaan ruumiista. Se uiskenteli nyt hitaasti
edestakaisin pelottavana vanginvartijana. Gardner katsoi sen kylmiin
pieniin silmiin ja värisi nähdessään niissä leimuavan,
ymmärtäväisen, leppymättömän vihan.

Kun hän tunsi itsensä kyllin tointuneeksi punnitakseen

asemaansa, täytyi hänen pakostakin myöntää, että se oli koko lailla
epätoivoinen. Koetellessaan kädellään ulospäin ja ylöspäin niin
pitkälle, kuin ulottui, ei hän tavoittanut mitään ulkonemaa, jonka
avulla olisi ollut toivoa päästä ulos komerosta ja sitten kiivetä ylös
kalliolle. Hän ei ensinkään osannut arvostella, kuinka kauan tuo
kostonhimoinen vartija aikoi pysyä toimessaan, mutta päättäen sen
vääryyden suuruudesta, jolla hän oli valasta loukannut, siitä
täsmällisyydestä, joka ilmeni sen vartioimisessa, ja siitä hurjasta
vimmasta, jota se oli hyökkäyksessään osoittanut, ei hänellä ollut
syytä odottaa, että se pian väsyisi virkaansa. Noissa hedelmällisissä
vesissä hän tiesi sen löytävän runsaasti syömistä, jättämättä
vahtipaikkaansa. Mutta vaikka nuo vedet uhkuivatkin merielämää,
täytyi hänen katkerin mielin myöntää ne perin tyhjiksi laivoista.

Rannikkoalusten oli tapana pysytellä kaukana maasta tällä

kohdalla rantaa salakarien ja hankalain merivirtain takia. Tästä
saaresta ei tosin ollut kuin noin puoli penikulmaa rantaan ‒ hänelle
helppo uimamatka tavallisissa olosuhteissa. Mutta vaikka hänen
vartijansa olisikin ollut poissa näkyvistä, ei hän olisi tuntenut mitään
halua uhmailla jättiläishaikaloja, jotka vaaniskelivat noissa
saaristosalmissa. Alttiina auringon kuumimmalle paahteelle ‒ kallio
hänen ympärillään tuntui epämiellyttävän kuumalta hänen
koskettaessaan ‒ hän ihmetteli, kuinka kauan kestäisi, kunnes helle
ja jano niin valtaisivat hänet, että hänen jalkansa sortuisivat hänen
painonsa alla ja hän suistuisi odottavan vihollisensa kitaan. Tässä
suhteessa hän kuitenkin pian rauhoittui huomatessaan, että aurinko
hyvin pian kulkisi kallion harjan yli ja jättäisi hänet varjoon. Mitä
kuumuuteen tulee, oli hän joltisessakin turvassa seuraavaan
aamuun. Mutta sitten, jos sää yhä pysyisi kauniina, kuinka hän
kestäisi aamupäivän pitkän, sietämättömän helteen, ennenkuin
aurinko taas painuisi kallion taa?

Hän alkoi rukoilla itselleen myrskyä ja pilvien verhoamaa taivasta.

Mutta tähän hän pysähtyi käsittäen pulmallisen tilansa. Jos nousisi
myrsky, tulisi se tähän vuoden aikaan luultavimmin kaakosta, ja
silloin jo ensimäiset kohoavat vedet ahmaisisivat hänet ylävältä
paikaltaan. Hän päätti nopeasti, että on parasta rukoilla vain yleisesti
eikä rohjeta esittää vaarallisia ehdotuksia kaitselmukselle.

Vaistomaisesti kopeloiden taskussaan hän veti esille lionneen,

tippuvan tupakkakukkaronsa ja laatikon märkiä tulitikkuja.
Jälkimäinen sisälsi muutamia vahatikkujakin, ja hänellä oli hämärä
toivo, että nämä huolellisesti kuivattuina ja oikein käsiteltyinä kenties
vielä syttyisivät. Hän levitteli ne tupakan kanssa kuumalle kalliolle
jalkainsa väliin. Häneltä oli tuhon mukana hukkunut piippu, mutta
taskussa oli kirjeitä, joista hän niiden kuivuttua tuumi kiertää
savukkeita. Tämä suunnitelma antoi hänelle jotakin tekemistä ja
auttoi näin kuluttamaan tuon raskaan iltapäivän. Mutta lopulta hän
huomasi, ettei ainoakaan tikuista saanut aikaan edes sähinääkään.
Vihaisena hän heitti niiden hyödyttömät jäännökset mereen.

Yö tuli äkkiä kuten aina näillä leveysasteilla, ja kuutamo lumosi

pitkät mainingit niin tyyniksi kuin kuvastin. Koko yön valas ui
edestakaisin kallion edustalla, kunnes sen liikkeiden muuttumaton
yksitoikkoisuus alkoi hypnotisoida vankia, joka käänsi silmänsä
kallioseinämään päin päästäkseen sen vaikutuksesta. Hän oli
kuolemantuskassa, peläten vaipuvansa uneen uupumuksessaan ja
putoavansa syvennyksestään. Hänen jalkansa olivat pettämäisillään
hänen allaan, eikä komerossa ollut tilaa hänen istahtaa tai edes
kyyristyä vähänkään mukavasti. Vihdoin epätoivoissaan hän päätti
uskaltaa laskea jalkansa riippumaan yli reunan, vaikka vihollinen
silloin voisi niihin ulottua, jos rohkenisi vielä yrittää tuollaista hurjaa
hyppyä ilmaan. Heti kun hän istahti tähän asentoon, ui se
lähemmäksi ja silmäili häntä sanomattoman ilkeästi. Mutta se ei
yrittänyt uudistaa lentävää hyökkäystään. Gardner näki selvästi, että
se ei halunnut toista samanlaista rajua yhteentörmäystä kallion
kanssa.
 Vihdoin tuo loputon yö sittenkin päättyi. Kuu oli jo kauan sitten
hävinnyt kallion taa, kun taivaan samettimainen purppura alkoi
ohentua ja jäähtyä, tähdet kalveta ja sammua. Sitten leimahti meren
yli pilvettömän troopillisen aamunkoiton ääretön komeus, ja vetten
välkkyvä pinta näytti kallistuvan aurinkoa vastaanottamaan. Gardner
kokosi kaikki uupuneet voimansa kohdatakseen sen tulikokeen,
jonka tunsi olevan edessään.

Paremmin siihen varustautuakseen hän riisui päältään kevyen

takkinsa ja nuoranpätkillä, jotka löysi taskustaan, laski sen veteen ja
liotti siellä perinpohjin. Valas tuli nuolena katsomaan, mitä hän
puuhasi, mutta hän veti märän takkinsa ylös, ennenkuin valas ehti
siihen tarttua. Hän tunsi, että tämä aate oli tosiaankin mainio
keksintö, sillä pitämällä päätään ja ruumistaan hyvin märkinä, hän
voisi kestää melkein mitä kuumuutta tahansa, ja kun samalla
imeytyisi vettä hänen sisäänsä, saattoi hän toivoa edes hetkeksi
torjuvansa janon tuottamaa ääretöntä tuskaa.

Mutta leppyvän kohtalon määräyksestä hänen koettelemuksensa

oli pian päättyvä. Noin yhdeksän tienoilla aamulla alkoi jostakin
saaren takaa kesken hiljaisuutta kuulua rämeätä, hidastahtista
jyskytystä. Gardnerin korvissa se oli suloisinta soittoa. Pian hän oli
kiskaissut yltään kevyen paitansa ja piteli sitä innokkain käsin. Vielä
hetkinen ‒ ja vahva neljänkymmenen jalan moottorialus tuli näkyviin.
Se oli noin sadanviidenkymmenen yardin päässä ja piti aika melua.
Mutta Gardner karjui kovaa ja liehutti paitaansa ilmassa, ja niin
hänen onnistuikin herättää aluksen huomiota. Se kääntyi kalliota
kohti, mutta pian moottorin ääni lakkasi kuulumasta, ja se kääntyi
taas poispäin. Luotsi oli huomannut Gardnerin vartijan.

Aluksessa oli kolme miestä. Eräs heistä puhutteli vankia.

 "Mikä hätänä?" kysyi hän lyhyesti.

"Minä ammuin eilen tuon pedon poikasen", vastasi Gardner, "ja se

murskasi veneeni ja ajoi minut tänne kalliolle."

Laivassa oltiin hetken aikaa ääneti, sitten kapteeni vastasi:

"Kuka vain etsii ikävyyksiä, löytää niitä tavallisesti alkamalla

kujeilla 'murhavalaan' kanssa."

"Olen kyllä itsekin jälkeenpäin ajatellut, että tein erehdyksen",

sanoi Gardner kuivasti. "Mutta se tapahtui eilisaamuna se, ja nyt
olen melkein lopussa. Tulkaa ottamaan minut pois."

Laivassa pidettiin lyhyt neuvottelu. Sillä välin valas yhä jatkoi

vahtikulkuaan kallion edustalla, ikäänkuin ei sellaisia laitoksia kuin
neljänkymmenen jalan moottoriveneitä kannattaisi huomatakaan.

"Teidän täytyy pysytellä siellä vielä vähän aikaa", huusi kapteeni,

"kunnes käymme hakemassa satamasta valaskiväärin. Meillä on
kyllä iso pyssy täällä, mutta on liian uskaliasta käydä semmoisella
valaan kimppuun, sillä jos emme ensi laukauksella tee siitä loppua,
pirstoo se tämän aluksen kymmenessä sekunnissa. Tunnin päästä
palaamme ‒ älkää siis hätäilkö."

"Kiitoksia!" sanoi Gardner, ja laiva hävisi kaukaa kaartaen saaren

taakse.

Vangitulle miehelle tämä tunti tuntui kauhean pitkältä, ja hänellä oli

syytä siunata viileätä likomärkää takkiaan, kunnes hän taas kuuli
moottoriveneen jyskytystä vankilansa takaa. Tällä kertaa se heti
tultuaan näkyviin suuntautui suoraan valasta kohti. Gardner näki sen
sulavasti liukuessa yli tyynen ulapan, että sen kokassa oli omituinen
ampuma-ase ‒ jonkinlainen lyhyt, isosuinen kivääri, jota voi tapin
varassa kääntää. Valas huomasi nyt, että alus laski suoraan sitä
kohden. Se pysähtyi väsymättömässä vartiokulussaan ja silmäili
laivaa uhmaten, epäröiden, tehdäkö hyökkäys vai eikö.

Laiva peruutti potkureillaan, kunnes se pysähtyi, kapteenin

samalla tähdätessä keulassa olevalla aseella. Valtava laukaus
kajahti. Hirviö lennätti itsensä puoleksi ylös vedestä ja putosi sitten
takaisin hirveästi läiskähtäen. Hetken se kieppui hurjana
puoliympyrässä, sitten ryntäsi päin kalliota, törmäsi sitä vasten ja
painui hitaasti rantakarille noin kahden sylen syvyyteen.

"Onko vettä runsaasti kallioonne asti?" kysyi kapteeni laivan

hitaasti lähestyessä.

"On kyllä", vastasi Gardner kompuroiden kankeasti alas

komerostaan seistäkseen valmiina kiipeämään kannelle.

Hämäränpeikko.

Risteillessään purppurahohteisessa iltahämyssä tuuhealehtisten

varjostavain oksain alla hämäränpeikko ajatteli yksinomaan hyttysiä.
Kultaisen kesäpäivän pitkät hiljaiset hetket se oli nukkunut hauskasti
riippuen käyristyneen laudan reunasta korkealla vanhan ladon
varjoisan kurkihirren alla tuolla niityllä. Siellä oli samalla tapaa
riippunut muitakin ruskeita lepakoita sen vieressä pitkien käyrien
kynsiensä kannattamina ja samoin kuin sekin kainosti kietoutuneina
kokoontaitettujen siipiensä tummaan silkinhienoon kalvoon. Se oli
yökköjen yleisesti suosima makuusuoja, tuo hämärä katonharjan
alusta, sillä käyristyneen laudan reuna oli sopiva paikka, mihin voi
itsensä kiinnittää; sentähden siellä oli suvaittu jonkun verran
ahtautta. Kerta toisensa perästä joku lepakoista oli tuntenut olevansa
likistyksissä ja herännyt, vikissyt ja pistänyt sivukumppaniaan
siipensä luisella kyynärpäällä ja toruskellut tyytymättömänä heikolla
äänellä ‒ heikolla, mutta ohuen karkealla ja narisevalla äänellä, joka
kuului siltä kuin olisi vetänyt kellorämää käyntiin.

Peikko itse oli sattunut roikkumaan rivin äärimmäisessä päässä,

lähinnä päädyn leveätä rakoa, josta pääsi suoraan ulkoilmaan, ja oli
useasti ollut vähällä irtautua orreltaan, joten sen osalle oli joutunut
tavallista enemmän heräilemistä, tungeksimista ja kellonnarinaa.
Kerran tai pari se oli tämän tavattoman valveillaolon aikana
häiriintynyt nähdessään ison rotan, joka vaanien hiiviskeli pitkin
paksua hirttä sen alla ja kiiluili ylös sitä kohden armottomilla
lasimaisilla silmillään. Se inhosi rottia, mutta tietäen olevansa
hyvässä turvassa tämän ulottuvilta se ei ollut hätääntynyt. Oli vain
kietoutunut siipiinsä ja nukahtanut jälleen vielä vihollisen
katsellessakin. Niin oli päivä sittenkin kulunut aika hauskasti.

Iltapäivän tultua se oli herännyt useita kertoja, kavunnut lepatellen

päätyraon luo ja tarkastellut ilmaa, kunnes vihdoin, kun aurinko oli
melkein painunut matalain kukkulain taa joen toiselle puolelle, se oli
tunkeutunut raosta läpi ja sukeltanut kultasinipunervaan hämärään.
Kymmenessä minuutissa makuusuojan kaikki muutkin asukkaat
olivat sitä seuranneet, ja vanhan ladon kurkihirren alusta oli jäänyt
tyhjäksi.

Kummannäköinen olento se oli, tuo pieni ruskea yölepakko ‒

linnun ja hiiren ja peikon sekoitus, hullunkurinen ja kuitenkin kaamea
‒ melkein kuin pikku paholainen, joka torkkui auringonvalon hetket ja
heräsi iltahämärissä oikullisiin, kummallisiin toimiin. Sen mitätön
ruumis, joka oli erinomaisen hienon, lyhyen, ruskean karvan
peitossa, riippui kahden suunnattoman ison pikimustan kalvosiiven
välissä. Tämä kalvo, joka oli joustavampi kuin paras kumi, oli
pingotettuna tavattoman pitkiksi kehittyneiden käsivarren- ja
sormenluiden päälle kuin silkki sateenvarjon kehykselle. Molemmat
siivet yhtyivät hännän puolella ja liittyivät myös hentoihin
takajalkoihin polveen asti, joka näytti kääntyvän väärään suuntaan.
Tukevien lapaluiden välissä oli omituinen, pieni, muodoton pää ‒
pystynenä, kummallisen leveä ja väärä suu, isot litteät korvat ja
pienet helmimäiset ilkeästi välkkyvät mustat silmät.

Niin kömpelö ja eriskummainen kuin hämäränpeikko olikin

heiluessaan orressaan tai kiivetessään ylös lautaseinää, esiintyi se
heti, kun oli pujahtanut illan hämyyn, perin ketteränä, vaikka yhä
vielä fantastisena olentona. Kun sillä oli niin laajat ja notkeat siivet,
ettei mikään samanpainoinen lintu vetänyt sille vertoja, olivat sen
liikkeet ilmassa ihmeellisen nopsat. Lentäen täyttä vauhtia suorassa
viivassa se saattoi yhtäkkiä pudottautua kuin kivi tai ampua ylöspäin
kohtisuorasta entisestä suunnastaan kuin heittokoneen
lennättämänä. Pyörryttävä ja hämmentävä risteileminen tuntui
olevan sen luontainen kulkutapa, ja se osasi väistää niin, että tuotti
häpeää varpushaukallekin. Ja se olikin hyvä asia, sillä se pyydysti
liiteleviä, tanssivia hyttysiä ja muita nopeakulkuisia hyönteisiä, ja
äkkiä kimppuun hyökkäävät pöllöt olivat sen erikoisia vihollisia. Tänä
iltana sen ladellessa tuoksuavien puiden ympärillä veden reunalla oli
ilma, jossa ei tuulenhenkeäkään tuntunut, täynnä hyönteisiä ‒
hyttysiä, varhaisia yöperhosia ja ensimäisiä harhailevia turilaita.
Nälkäinen kun oli, se ahmi kaikki, mitä näki. Mutta illan pimetessä,
kun jo pahin nälkä oli poissa, kävi se nirsommaksi. Se antoi monen
helposti saatavan herkkupalan luiskahtaa aivan huuliltaan ja
huvikseen lepatteli pyydystäen jotakin melkein saavuttamatonta.
Kerran tarkalla näköaistillaan huomatessaan korkealla lentävän
perhosen kaukana puunlatvain yläpuolella vaaleata sinipunervaa
taivasta vasten se ampui ylöspäin nopeana kuin ajatus, sieppasi
saaliin aivan liitelevän yökehrääjän nokan alta ja hävisi, ennenkuin
pettynyt lintu kykeni tajuamaan, mikä sen edelle oli ehtinyt. Toisen
kerran pudottautuen kuin luoti se tempasi turilaan taipuvalta
ruohonkorrelta, herättäen raivoisaa katkeruutta päästäisessä, joka oli
vaaniskellut hyönteistä ja juuri aikonut hypätä sen kimppuun.
Luultavasti peikon silmät, joille hämy oli kirkas kuin kristalli, olivat
huomanneet hiiviskelevän päästäisen ruohikossa, ja sille tuotti kai
omituista iloa temmata tältä saalis. Itse vanhat tornipääskysetkin
joskus pettyivät tällä tavoin, kun eksyttävä varjo liihoitteli niiden ohi ja
jo melkein saavutettu perhonen salaperäisesti hävisi.

Kun sinipunerva valo sammui taivaalla, jätti hämäränpeikko

niittynsä ja lensi myötävirtaa kentän ja pensasaidan yli tilavaan
puutarhaan, missä tuuheiden puiden keskellä oli nurmea ja
kukkalavoja ja avarakuistinen talo. Täällä lempeä kesäyö loihti esiin
huumaavaa tuoksua kasteen kostuttamista ruusuista ja leukoijista,
japanilaisista liljoista ja höysteisistä neilikoista, ja tänne
hunajantuoksun houkuttelemina yöhyönteiset riensivät parvittain.
Pitkin leveätä käytävää puutarhan perällä veden rannalla kasvavien
puiden alla kävelivät muuan mies ja tyttö edestakaisin, tytön
valkoisen hameen vienosti hohtaessa varjojen keskellä.

Tässä miellyttävässä paikassa liittyi peikon seuraan toinen pieni

ruskea yökkö, naaras, kenties sen aviokumppani, ainakin sen
leikkitoveri. Se ei vielä ole kyllin ilmaissut yksityiskohtaisia
salaisuuksiaan ja kotitapojaan, jotta kykenisimme tässä kohden
väittämään mitään varmaa. Vähän aikaa nuo kaksi näyttivät
joutessaan pistävän ilmassa tanssiksi kierrellen toistensa ympäri,
ylitse ja alitse ja kerran toisensa perästä äkkiarvaamatta lentäen
erilleen pitkille pyörryttäville retkille yhtyäkseen erehtymättä taas
jossakin kohtauspaikassa yläilmoissa.

Naaras lensi vähemmän kevyesti, vähemmän oikullisesti kuin

peikko itse; ja jos joku olisi sen nähnyt läheltä ja hyvässä valossa,
olisi hän huomannut, että niin leikkisä kuin se olikin, oli se mitä
uskollisin ja hellin pikku äiti, joka kantoi mukanaan kahta
pienokaistaan kaikessa karkelossakin. Jollakin omituisella tavalla
pienokaisten onnistui niin varmasti pidellä kiinni sen kaulasta, ettei
vinhimmissäkään pyörähdyksissä, huimimmissakaan
äkkilennähdyksissä niillä ollut vaaraa pudota. Mutta varmaan se oli
vilkkaanpuoleinen kokemus poikasille, jotka olivat vielä niin nuoret,
ettei niitä uskaltanut jättää kotiin latoon, missä vaaniva hiiri saattoi ne
löytää.

Kesken niiden leikkiä lennähti jostakin kaukaa laajasiipinen

äänetön olento niiden kimppuun. Kaksi tavattoman isoa, ihan
pyöreätä silmää kiilui räpäyttämättä, kalpeahohteisina niitä kohden,
ja suunnattomat kynnet, ilkeästi kourien, tuijottivat niitä suunnalta ja
toiselta hirveän hiljaisuuden vallitessa. Sekä peikon että pikku äidin
onnistui päästä näitä kourivia kynsiä pakoon; niin salamannopeasti
ne väistyivät, että pöllön hyökkäys tuntui puhaltaneen ne kuin lehdet
syrjään. Silmänräpäyksessä ne hävisivät syvälle oksien keskelle, ja
pettynyt pöllö viuhtoi eteenpäin hakemaan vähemmän petollista
saalista.

Muutaman hetken kuluttua yököt lepattivat taas esille. Mutta

vaikka ne eivät olleetkaan masentuneet, ymmärsivät ne, että
varovaisuus oli tarpeen vihollisen vielä ollessa lähitienoilla. Siksi ne
siirtyivät leikkimään puutarhan alapäähän, missä mies ja tyttö
kävelivät, ja alkoivat kierrellä ja tanssia näiden muihin mietteisiin
kiintyneitten ympärillä. Ihmisolennot olivat niiden mielestä
vaarattomia ja oikein hyödyllisiäkin pöllöjen pelättimenä.

Äkkiä, peikon hämmästykseksi, tyttö kirkaisi heikosti ja kietaisi

joutuin kevyen silkkihuivinsa kauniin päänsä ympärille.

"Ai", huudahti hän hermostuneesti, "tuossa on taas tuollainen

kauhea yökkö, joka pyrkii hiuksiini!"

Mies nauroi hiljaa ja veti hänet itseään lähemmäksi.

"Pieni hupakko", sanoi hän, "ei yökköä saisi viekoitelluksi

sinunkaan tukkaasi! Sillä on niin huono maku, että se pitäisi tukkaasi
erittäin vastenmielisenä."

"Mutta saattaisihan se vahingossa eksyä sinne", väitti tyttö silmien

pelokkaina seuratessa miehen käsivarren suojasta kahden tanssivan
varjon liikkeitä. "Tiedäthän, että ne ovat melkein sokeita. Ja kun olin
pikku tyttö, kertoi hoitajani, että jos joskus yökkö pääsisi hiuksiini, ne
täytyisi leikata kokonaan pois, sillä se olisi niin sotkeutunut niihin,
ettei sitä millään keinoin saisi irti."

"Hoitajasi on nähtävästi tiennyt tavattoman paljon asioita, joissa ei

ole perää", vastasi mies. "Säästät itseltäsi paljon huolta kesä-iltoina,
rakkaani, jos pidät mielessäsi, että yököt ovat mahdollisimman
kaukana sokeudesta. Ne ovat uskomattoman tarkkanäköisiä, eivätkä
koskaan mene harhaan, vaan lentävät ja väistävät tarkemmin kuin
mikään lintu. Kumpainenkin noista pikku veijareista osaisi temmata
hyönteisen pienen miellyttävän nenäsi päältä hipaisemattakaan
sinua siivellään."
 "Vai niin!" sanoi tyttö huokaisten helpotuksesta. "Mutta minä en
niistä sittenkään pidä. Jospa ne menisivät pois!"

"Niinkuin koko maailma, ne rientävät täyttämään pienimmänkin

toivosi", vastasi mies naurahtaen taas, sillä tytön lausuessa viime
sanat sekä peikko että sen leikkitoveri liitelivät pois ja hävisivät
puitten latvain sekaan.

Se ei johtunut siitä, että ne olisivat ymmärtäneet ihmiskieltä tai että

niiden herkät hermokeskukset olisivat saaneet kaukovaikutteisen
viestin tytön kauhuntunteesta. Ei ollenkaan. Syynä oli
yksinkertaisesti se, että pikku äiti oli väsynyt kaulassaan riippuvien
vauvojen painosta ja lentänyt etsimään turvallista oksaa, jonka
varaan ne voisi kätkeä muutamaksi hetkeksi.

Korkealla erään hongan tummassa latvassa sai kuppimaisesti

kovertunut ontelo haaraantuneessa oksassa pideltäväkseen nuo
kaksi pienokaista, jotka jonkin äidiltä saamansa ohjeen mukaisesti
litistivät pienet olentonsa puun kuorta vasten pitäen kiinni sen
karheudesta. Siellä niitä ei voinut mikään vaara uhata, tuumi pieni
äiti. Niin se jätti ne lepuuttaakseen siipiään vielä jonkun hetken
vapaassa lennossa ja nauttiakseen taas muutaman hyttysen ja
perhosen. Peikko oli katsellut, kuinka toinen pani pienokaisensa
oksalle, ja lensi nyt kevein mielin yhdessä sen kanssa hankkimaan
muonaa kukkalavoilta.

Tuskin viisi minuuttia ne olivat olleet poissa, kun pikku emo äkkiä
sai päähänsä, että vauvat kaipasivat sitä. Korkeassa kaaressa se
nopeasti kiiti takaisin männyn latvaan, ja peikko, epäröityään hetken,
seurasi sen kintereillä.
 Sattumalta oli muuan kärppä, julmat silmät punaisina raivosta ja
verenhimosta, pyydystämässä samassa hongassa. Se oli juuri
kadottanut oravan jäljet, jota oli seurannut niin läheltä, että oli jo
pitänyt sitä omanaan. Se oli jo melkein kuvitellut hampaittensa
olevan pienen raksuttajan kurkussa, kun jonkin yöllisen ihmeen
kautta ‒ villieläinten maailmassa yö on ihmeitä täynnä ‒ saalis ja
jäljet hävisivät. Se oli tapahtunut hongassa, ja raivoisa metsästäjä
juoksenteli kaikkialla puussa kadonneita jälkiä hakemassa päättäen
olla antamatta sisustaan perään. Se juoksi notkeana ja vinhana kuin
käärme pitkin sitä korkeata oksaa, jonka erääseen uloimpaan
haarukkaan pikku yökkö oli jättänyt pienoisensa.

Hämäränpeikko ei koko lyhyenä elinaikanansa ollut joutunut

todelliseen erimielisyyteen minkään pelottavamman kuin suuren
yöperhosen tai turilaan kanssa. Se tiesi hämärästi, mikä
vastustamaton ja kauhea hirviö oli tuo pitkä tumma hahmo oksalla;
kuitenkaan se ei epäillyt. Kärppä sai kummakseen vasten
naamaansa ankaran sivalluksen kovasta siivenkärjestä. Heikosti
kiljahtaen se hyppäsi ylöspäin puolet mittaansa haukkaamalla
tavoittaen röyhkeätä rauhanrikkojaa. Mutta sen pitkät valkoiset
hampaat tapasivat vain ilmaa, ja se oli vähällä menettää
tasapainonsa. Toinnuttuaan, raivosta puuskuen, se näki takanaan,
melkein ulottuvillaan tumman pienen lepattavan varjon, joka näytti
ryömivän oksaa pitkin kuin haavoittunut yökehrääjä. Vetäen itsensä
koukkuun yhtä notkeasti kuin ankerias se syöksyi tulenliekin tavoin
röyhkeän pienen varjon kimppuun. Mutta juuri silloin varjo hävisi, ja
muutaman jalan päässä oksan alapuolella se näki hämäränpeikon
rauhallisesti lentelevän edestakaisin. Kärpän kapeaväliset silmät
hohtivat kuin palavat hiilet, ja se kiristeli pitkiä valkoisia hampaitaan
häpeästä, kun oli joutunut kurjan yölepakon ivattavaksi. Mutta sillä
välin oli pieni äiti rauhassa korjannut taas kaulalleen lystilliset
vauvansa ja liidellyt niiden kanssa tiehensä pimeyden halki.
Toistaiseksi se oli saanut kyllikseen tämäntapaisesta
vallattomuudesta; nyt se ajatteli vain, että oli vietävä pienoiset
turvalliseen soppeensa ladon katon alle, missä saisi niitä imettää,
nuolla niiden silkkistä karvaa ja puhdistaa niiden hentojen pikku
siipien hienoja kalvoja kuljettamalla niitä varovasti huultensa välissä.

Jäätyään taas yksikseen hämäränpeikko, kenties kiihtyneenä ja

uhkarohkeana onnistuneesta seikkailustaan kärpän kanssa, joutui
kohta uuteen kokeeseen. Aivan talon edessä se ajoi takaa suurta
perhosta, joka lensi uskomattoman nopeasti. Kovassa hädässään
tämä kiiti avoimesta ikkunasta pimeään huoneeseen. Peikko seurasi
rohkeana. Se sai pakolaisen kiinni, kun tämä löi kattoa vasten.
Samassa hetkessä palvelija sulki ikkunan. Sitten, huomaamatta
tunkeilijaa, hän meni ulos ja sulki oven.

Luullen pääsevänsä ulos yhtä helposti, kuin oli tullut sisään, lensi
peikko kiivaasti kalpeavälkkeistä lasia vastaan. Se huumaantui
hiukan ja hämmästyi aika lailla. Uudelleen ja vielä kerran se koetti
läpäistä kovaa, näkymätöntä estettä, mutta ei sokeasti eikä kauhusta
kiihkeänä, kuten lintu olisi tehnyt. Sillä pysyi pää selvänä tässäkin
säikähdyttävässä ja odottamattomassa kohtauksessa. Sen tarkka
näkö erotti ensi hämmästyksestä saadun täräyksen perästä lasin
sen takaisesta ilmavasta tilasta, ja tyynesti se luopui yrittämästä
mahdotonta. Sitten se rupesi tarkasti tutkimaan huoneen joka
loukkoa ja nurkkaa, mutta niin täsmällinen se nytkin oli näkönsä ja
lentonsa puolesta, että vaikka huone oli täynnä kaikenlaisia
pikkukatuja, ei sen siipien liike häirinnyt mitään. Se meni joka
huonekalun alle, joka kuvan taakse ja tutki väsymättömän
huolellisesti tulenvarjostimen, joka oli kesäksi pantu takan eteen.
Tämän puuhansa ohella se löysi odottamattoman paljon erilaisia
hyönteisiä eikä suinkaan ollut niin hätääntynyt, ettei olisi ahminut
joka makupalaa, mikä sen osalle sattui.

Yö kului tähän tapaan tosin hieman levottomasti, mutta ei

yksitoikkoisesti. Kun aamuhämärä hiipi ikkunasta sisään ja väri alkoi
palata loistavien kurjenpolvien kukkalavoille, silloin peikko heitti
turhan haeskelunsa, vaikka ei suinkaan epätoivoisena. Päivä oli sille
makuuaikaa. Ripustautuen mukavasti raskaiden verhojen
laskokseen huoneen toisessa päässä se nukahti yhtä filosofisen
rauhallisena, kuin jos olisi ollut laudallaan vanhan ladon
katonharjassa.

Muutamia tunteja myöhemmin kaksi sisäkköä tuli huoneeseen

alkaen sitä siivota. Silloin he ottivat alas verhotkin. He puistelivat
niitä huolimattomasti, ennenkuin taittoivat ne kokoon, ja heidän
kauhukseen putosi niistä esille hämäränpeikko.

Nähdessään tämän hirviön, joka oli melkein neljä tuumaa pitkä, he

päästivät kimeän kirkunan, ja sen kuultuaan riensi sinne sama mies,
joka oli kävellyt puutarhassa tytön kanssa edellisenä iltana. Hänellä
oli ratsastushousut jalassa ja kintaat käsissä. Vasta puoleksi valveilla
ja kovin suuttuneena siitä, että oli näin häikäilemättä herätetty, istui
peikko matolla siivet puoleksi levällään pienten mustien silmien
säihkyessä. Se ilmaisi mielipiteensä tytöille niin kiivaasti, kuin vain
kykeni, ja tämä kuului vähän siltä, kuin olisi vedetty hyvin isoa ja
hyvin puutteellisesti öljyttyä taskukellorämää.

"Hyvänen aika, Jane", huudahti mies, "luulin että olitte Gracen

kanssa kaivanut esille ainakin virtahevon, kun nostitte niin kamalan
äläkän! Luuletteko, että tämä pieni yökkö-raukka aikoo syödä
teidät?"
 Hän kumartui ottamaan peikon lattialta, mutta pikku veitikka sähisi
niin kimakasti häntä vastaan ja puraisi häntä niin uhmaavasti, että
hän iloitsi paksuista kintaistaan. Palvelijattaret tirskuivat.

"Näettekös, herra?" sanoi Jane rohkeasti. "Kyllä se söisi meidät,

jos saisi; se on niin villi."

"Se on tosiaankin urhea pikku paholainen", vastasi mies nostaen

sen varovasti kinnaskourassaan ja vieden sen ikkunalle.

Peikko oli nyt ihan hereillä, ja sen "kellonveto" oli kiukusta

rämeätä, kun se oli vangittuna miehen kädessä. Ikkunan ääressä
mies laski sen vapauteen. Täysi päivänpaiste häikäisi sitä, mutta
sulkien silmänsä hiuskarvan levyiseksi raoksi, se erotti maiseman
aivan selvästi. Silmänräpäyksessä se heittäytyi ilmaan, ja
seuraavassa se jo lenteli lähimpäin puunoksien keskellä. Pysytellen
niin tarkoin kuin mahdollista puitten välissä se suuntasi matkansa
veden rannalle ja sitten ketojen yli vanhalle ladolle. Parin minuutin
kuluttua se levollisesti ripusti itsensä nukkuvien kumppaniensa
viereen katonharjan lämpimään ruskeaan hämyyn.

Tavallisissa oloissa peikko nyt olisi jäänyt nukkumaan iltaan asti.

Mutta tämän vuorokauden oli kohtalo säätänyt sille monivaiheiseksi.
Kapealla ylimmäisellä orrella, muutaman jalan päässä alapuolellaan,
se huomasi eilisiltaisen leikkitoverinsa, pikku äidin kahden lapsensa
kanssa. Tämä oli laskenut ne hirren sileälle pinnalle siksi aikaa, kun
itse järjesteli ulkoasuaan, mikä puuha on yhtä tärkeä yökölle kuin
hienoimmalle kissalle. Hämmästyttävän taitavasti se raappi
korviensa taustoja kynsiin päättyvillä siivillään ja kampasi karvoja
ruumiinsa näennäisesti saavuttamattomissa osissa. Sitten se otti
siipiensä kalvot, ensin toisen ja sitten toisen, oikoi ne, tarkasti niitä,
veti ne hampaittensa välitse ja nuoli niitä, kunnes ei enää voinut
syntyä epäilystäkään niiden puhtaudesta.

Tämän puuhan aikana lensi muuan pääskynen savipesästä

räystään alta vinhasti kattoa kohti ajaen takaa isoa sinipunervaa
mehiläistä. Epätoivoinen hyönteinen vältti takaa-ajajansa juuri
kurkihirren alla ja syöksyi alaspäin orren ohitse melkein sipaisten
pieniä yökköjä mennessään. Pääskynen lensi huolimattomasti sen
perästä ja teki enemmänkin kuin vain hipaisi noita pieniä kömpijöitä.
Se näet riipaisi niitä niin kiivaasti, että ne luisuivat pois orrelta. Vielä
lentoon oppimattomina ne kuitenkin levittivät hennot siipensä ja
putosivat lepatellen kuin kaksi kuihtunutta tammenlehteä lattiaan.

Ladon lattialla oli onneksi paksulta viime vuoden heinien jätteitä ja

muita roskia, niin että pienokaiset putosivat pehmeälle eivätkä
loukkaantuneet. Mutta ne joutuivat kauas erilleen, kuten kahden
lentelevän lehden olisi käynyt. Emo, joka onnettomuuden sattuessa
oli melkein kietoutuneena siipiensä laskoksiin, irroitti itsensä rajulla
liikkeeltä ja pyyhälsi alas niiden perästä. Silloin peikko, joka oli viime
seikkailuistaan käynyt yritteliääksi, tuli risteillen sen jäljestä
katsomaan, olisiko mitään tekemistä.

Sitä kyllä oli, vieläpä siekailematta. Suuri rotta, joka asui ladon
lattian alla, oli juuri tulossa kolostaan. Se luuli nähneensä jonkin
putoavan ja vaikkei se tiennyt, mitä se oli, tapsutti se esille hyvin
toivorikkaana. Sen mieleen johtui, että ehkä tuo oli nuori pääskynen,
joka putosi tai tungettiin ulos pesästään, ja se piti nuorista
pääskysistä vaihteen vuoksi.

Äkkiä sen huomion käänsi toisaalle kevyt isku päähän. Yökkö oli
nähtävästi melkein pudonnut sen selkään. Rotta ei suuttunut;
päinvastoin se tunsi tavatonta mieltymystä. Se ei ollut koskaan
syönyt yökköä, vaikka usein oli halunnut, ja nyt näytti tulleen hyvä
onni, sillä tuo yökkö oli nähtävästi saanut vamman tai sairastunut.
Rotta hyppäsi sitä kohti. Tosin yökkö luiskahti rotalta, mutta vähältä
piti, ja se lepatteli vielä heikosti melkein rotan ulottuvilla. Yhä
uudelleen rotta hypähti ylöspäin, ja pitkät valkoiset hampaat
loksahtivat yhteen ilkeästi narskuen, mutta saamatta mitään, kunnes
se vihdoin huomasi olevansa taas nurkassa reiän luona, josta juuri
oli tullut. Silloin rotan kiusaksi heikosti lepatteleva olento, joka oli
tuntunut olevan melkein sen kynsissä, kiiti voimallisilla siivillään pois
kattoon, samalla kuin toinen yökkö kohosi kaarrellen keskeltä lattiaa
kaksi pienokaista kaulassaan.

Hämillään ja suutuksissaan rotta hiipi ruohikkoon saamaan

lohdutusta kepeäjalkaisista heinäsirkoista, kun taas hämäränpeikko
voitonriemusta paisuen liiteli takaisin korkealle orrelleen.
Seikkailtuaan pöllöjen, kärppien, perhosten, ihmisten ja rottien
kanssa se tunsi tavallisen uneliaisuutensa haihtuneen. Siksi se ryhtyi
siistimään itseään niin perinpohjaisen tarkasti, kuin sopi tällaisia
urotöitä suorittaneelle ruskealle yökölle.

Kun eversti tuli Gallagherin leirille.

Gallagherin leirijoukko oli pieni ‒ kahdeksan miestä vain, paitsi

päällikköä ja keittäjää.

Se metsälohko, jota nämä kaatoivat, oli syrjäinen ja rajoitettu ‒ se

pieni laakso, mistä raju Ottanoonsis-joki saa alkunsa lammikosta,
jolle puunhakkaajat ties mistä syystä ovat antaneet nimen "Kaksi
järveä." Tänään, jouluaattona, oli leirissä ollut nurinaa; sitä ei iso Tim