Dresda E. Méndez de la Brena
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‘Caring matter’
A love story of queer intimacies between (her) body and object (her cigarette)

In what way do ‘things matter’ to the lives of chronically ill and disabled individuals? What kinds of ‘care arrangements’ do they enter into and make with the material world so they can live as well as possible? This chapter offers an intimate exploration of how objects come to matter within disability worlds, and the role they play in different care-making practices and various forms of love production. Against the background of the love story of caring for my partner, who is narcoleptic and a heavy smoker, this chapter introduces the concept of ‘caring matter’, through which I theorise queer intimacies between disabled persons and objects. Building on an auto-phenomenographic exploration of my autobiographical writing, poetry and photography, I explore the ‘intimate act of love’ framed in the smoking-and-breathing encounter between my partner and her cigarette. In the conclusion, I summarise my reflections on ‘caring matter’, and the ways that matter can show us how non-human care ‘works’ when human-provided care is absent or insufficient. Ultimately, I ask for critical thinking on smoking from the perspective of feminist intersectionality and disability studies.

‘What does “care” mean when we go about thinking and living interdependently with beings other than human’ in disabled worlds (Puig de la Bellacasa, 2017)? In what way do ‘things matter’ to the life of chronically ill and disabled individuals? What kind of ‘care arrangements’ do they enter into and make with the material world so that they can live as well as possible? These are the questions addressed in this chapter. My empirical focus is a specific case. I unfold my reflections on ‘caring matter’ and ‘affective intimacies’ in the context of the love story of caring for my partner, who is narcoleptic and a heavy smoker. Against this background, I am committed to a discussion of the ‘intimate act of love’ between disabled individuals and objects, where love is neither pure nor liberatory but ‘caring’ nonetheless. Overall, I discuss what I call ‘caring matter’ – that is, as an intimate entanglement created between disabled bodies and objects in affective moments where human care cannot fit into their world to provide it.

The focus is on the concept of ‘caring matter’. I coined this concept as a queer re-elaboration of disability scholar Arseli Dokumaci’s (2020) concept of ‘care intimacy’ and feminist science and technology studies scholar María Puig de la Bellacasa’s (2017) notion of ‘matter of care’. Care is a widely contested, multifaceted and unstable term with varying connotations including burden, necessity, as well as (inter)dependence and emotional and affective fulfilment. All these engagements with care reveal how ‘care’ implicates different relationalities, issues and practices in different settings. In particular, scholars who cover issues of care investigate these fundamental issues – including dependency, informal and formal care, caretaking work and the ‘ethics of care’ – in the context of human care relationships. However, care, in this context, is normally positioned as something only humans do. In queering the concept of care in relation to matter, I align my analysis with this volume’s broad and inclusive definition of affective intimacies, bringing to the foreground the affective entanglements between persons and objects, the human and non-human as constituents of various forms of care production.

The analysis presented here is part of a more comprehensive research project on chronic pain, care, intimacy and affective methodologies undertaken during my PhD studies. The method used in this chapter is an auto-phenomenographic (auto-ethnography with a phenomenological approach) exploration of autobiographical writing on everyday intimate moments between me and my partner. The material that I explore consists of personal excerpts from poetic narratives, speculative storytelling and photography as visual/narrative imaginaries, motivated by my attempts to create a different way to write academically. As Deborah Bird Rose (2012) argues, ‘writing is an act of witness; it is an effort not only to testify to the lives of others but to do so in ways that bring into our ken the entanglements that hold the lives of all of us within the skein of life’ (139). Auto-phenomenography invites us to re-evaluate knowledge-seeking outside the rigidity of academic writing, using any available ‘semiotic technologies’ – that is, practices and arts (i.e. art, poetry or any other sensual method of telling) of creating meaning with signs, metaphors, figurations, words, ideas, descriptions and theories to invigorate an ethical sensibility and response-ability for the Other (Allen-Collinson, 2010; Haraway, 1988; Puig de la Bellacasa, 2012).

Consequently, I decided to start this chapter with a love story. A story of unexpected (queer) love between my partner and myself as we enter into a process of being-in-love.1 The story leads to excerpts of conversations associated with my partner’s smoking habits on a day that was as good as any other. Secondly, I introduce the concept of ‘caring matter’, through which I theorise queer intimacies between persons and objects and the ways in which this affective relationality is performed against the background of my unsuccessful attempts to provide her with the care required. Thirdly, with ‘caring matter’ as a theoretical frame, I analyse the excerpts of our conversations with a focus on the ‘intimate act of love’ framed in the smoking-and-breathing encounter. Love, here, is not equivalent to romantic, innocent love or a love that leads to a healthier life, but a kind of love that offers a multi-layered, non-pure approach to the meanings and complexities of caring in disability worlds (Weaver, 2013). In the conclusion, I summarise my reflections on ‘caring matter’, and the ways matter can show us how non-human care ‘works’ when human-provided care is absent or insufficient. Ultimately, I call for critical thinking on smoking from the perspective of feminist intersectionality and disability studies.

A (queer) love story

I met her on Tinder. I was in Vienna for an academic conference and since my academic companions were younger than me, their party night interests were quite different from my own. I wanted to meet someone to show me the city. We matched on Saturday and we started to talk on Sunday. We set a date, Monday at 7:00. She chose the bar. Before saying good night, she asked me if I was familiar with narcolepsy. I wittily replied, ‘Are you telling me this in case you fall asleep abruptly so I do not think I am boring you?’ ‘Yes, exactly that’, she replied.

I remember her entering the room wearing a long grey coat and rounded vintage glasses. The beautiful mane of her curly hair distracted me from her formal introduction. She sat in front of me. I was nervous and she could tell. She was nervous but I did not realise. I no longer remember what we talked about, but I remember with clear lucidity the moment that made us unfold ourselves into each other. While I was sharing my long-standing interest in and practice of photography and my desire to engage in ways to represent illness, I remember her looking at me forcefully, as if she wanted to see beyond me, through me. At first, I thought I was making her feel uncomfortable. Thousands of worried thoughts rushed through my head. Was I telling her something politically incorrect? Was I assuming in my understanding and speaking about disability? Was I boring her? My egocentric concerns vanished when she suddenly held my hand while losing her bodily composure. Without further notice, she was having a sleeping attack in front of me. I first became terribly stressed; then, I was thwarted by my inability to help her appropriately. A few minutes later, when she regained all her vitality, she jokily said to me: ‘you cannot say I did not warn you’. We both started to laugh. That was the moment in which our love story unfolded: she fading away while holding my hand and I falling in love while touching hers.

Since that unforgettable evening I was pulled into her wonderful world. A world of a truly warm-hearted loving person who had built a positive environment around her in order to navigate through the difficulties of living with narcolepsy. A number of difficult situations come along each day for the both of us: the tiredness that limits her in daily activities such as cleaning or organising; the difficulty of waking her up – due to cataplexy (i.e. a person experiencing total cataplexy stays awake and is cognisant of the surroundings but is completely unable to move) – knowing that by doing it, I am provoking in her the most excruciating pain. But without a doubt, the most striking moment of our day is when she is having a sleeping attack. I can now identify these moments by looking at her eyes. Her beautiful brown-caramel eyes start to become surrounded by the most visible dark circles. This can happen at any time of the day. However, she has developed certain habits in order to control her sleeping attacks such as not eating before an important event or writing with her left hand – although she is right-handed – to focus her mind and physically challenge her body to stay awake. But by far, the most effective of these habits is smoking. And, oh my, does she smoke considerably. I am not a frequent smoker but I have succumbed to it particularly while going through moments of stress, sadness or depression. However, I had never co-habited or been-in-love with a genuinely committed smoker, and consequently, I never realised how much I had incorporated the negative idea of the smoker into my own attitudes towards what I consider ‘too much smoking’. My limited perspective narrowed my view of why individuals whose ‘health’ is considered in decline engage in acts that are presumably ‘harmful’ to or ‘endanger’ their own health. My narrow perspective on an individual’s smoking history and the specificities of their bodily experience while smoking led me to judge my partner’s smoking habits more frequently than I dare to recognise.

Could you please open the window? The living room smells like a canteen. You have just finished smoking one cigarette. Is it really so necessary to light up another one so soon? – I ask half kindly, half mad.

I am sorry, I will move next to the window. I will try to remember to open the window the next time. – She kindly replies. I know I should reduce my smoking. I will try but it is not as easy as you think, at least for me. I have been smoking since I was 14 years old, and my relationship with my cigarette is more complicated than you dare to imagine. This [referring to the cigarette] is the only thing I know that helps me to be here talking to you without losing my concentration or falling asleep.

My partner’s habits are not dissimilar to the statistics on the prevalence of smoking in adults with chronic pain (Orhurhu et al., 2015). In particular, narcoleptic smokers’ statistics report relief from symptoms by smoking tobacco cigarettes (Ebben and Krieger, 2012). It is widely studied how narcoleptic patients perceive nicotine as helping them to decrease excessive daytime sleepiness and cataplexy, but also how smoking can lead to injuries when narcoleptics fall asleep (Barateau et al., 2016; Krahn et al., 2009). She and I read these studies identifying how while driving, she rolls up a cigarette to help herself stay focused on the road, or how most of her clothes are damaged by falling asleep holding a cigarette butt. However, there is something else at stake other than mere statistics. In her excessive daytime sleepiness, sucking on a cigarette is a self-referential moment that not only settles the craving for falling asleep but also provides her with a more intimate relation to more-than-human others.

There is a ‘relationship’, a sort of affective exchange performed or enacted between my partner and her cigarette. A form of care that surpasses traditional imaginaries of the intimate. A (queer) love story that unfolds between her mouth and the touch of smoke. A sense of help emerges as an affective dimension in daily practices of use and encounters with objects, essential to different kinds of world-making and world-surviving. In this encounter, my partner finds something she can count on. My partner’s body has developed a particular relationality with cigarettes that brings together different situated intimate experiences and theoretical engagements with matter. In this ‘caring moment’, relief, help, comfort, intimacy, love and life support are provided by matter when it is not possible for care to be performed by human contact. Sometimes, ‘caring matter’ is an indispensable living-ground constituent for the everyday sustainability of the lives of disabled people. ‘Caring matter’, therefore, asks us to consider the elusive phenomenological realm of illness/disability and care, and how it pushes us to speculate on intimate entanglements, queer love stories and queer socialities that matter.

‘Caring matter’

As a theoretical framework for the analysis, the concept of ‘caring matter’ brings together affective intimacies as other-than-human intimacies. First, allow me to reveal the personal motivations and theoretical engagements behind the formulation of this concept. As a trans feminist scholar, I am familiar with the different theoretical debates that address the complex emotional and material concerns that caring entails (Engster, 2005; Noddings, 2013; Ruddick, 1995; Tronto, 1998). As an activist, I recognise the variety of caring processes that are crucial for the articulation and the organisation of everyday life, and how care comes to matter as a political and material performance. As a daughter, I face and struggle with the feminisation of care (in its two main connotations: ‘caring about’ – the feeling part of caring; and ‘caring for’ – the practical work of tending to others) (Glenn, 1992; Lutz, 2018) when parental care is assumed to be my responsibility and not that of my two brothers. As a partner, my concern for care intersects with disability contexts due to the emotional relationship I have with my narcoleptic partner (Watson et al., 2004). Care, in this context, comes with ableist self-identifications, particularly when reflecting upon the complexities of growing old together with a smoker and/or when thinking about the difficulties and fatigue of physical care that being with my partner entails.

In the recollection of my personal biography, care is and has been lived through struggle, contradiction and flux. However, despite – or rather because of – its complexities, care has also become a bridge between the rational knowing of what epistemologically I think I know and the affective and bodily dimensions of care that make it essential to different kinds of ‘knowledge-making’ and ‘world-making’ for me, for my partner and for other disabled people. As a person dwelling in another’s experience of disability, I have become particularly interested in how to build worlds where companionship can make possible certain kinds of affordances (Dokumaci, 2017, 2019, 2020) or where my body can work as a ‘prosthetic extension’ (Lykke, 2018) to ameliorate my partner’s life in moments of sleepiness or pain. ‘Thinking with care’ (Puig de la Bellacasa, 2012) through the lens of disability has helped me to explore new ways to think and write about what care does when performed, and what kind of actors are entangled or neglected in the process of caring. Thinking with care also requires thinking with relational processes and interdependent worlds. Care, in this context, necessitates not only a profound vision of caring (Puig de la Bellacasa, 2010, 2012, 2017) but a speculative exploration of forms of care, unfolded through the prism of what is possible rather than what is probable (Haraway, 2008, 2016, 2019; Wilkie et al., 2017). The concept of ‘caring matter’ is therefore articulated in the midst of a series of theoretical threads that weave disability and technoscience thinking and speculative writing practices, offering a more specific and intimate understanding of care and caring as ‘matters of care’ (Puig de la Bellacasa, 2010).

To untie the first theoretical knot of ‘caring matter’, I draw attention to the work of Turkish/Canadian disability scholar Arseli Dokumaci. Given her background in performative studies and informed by her own chronic illness, Dokumaci is interested in how disability and performance can offer a ‘new way to think through how disabled individuals might transform the very materiality of the environment through the most mundane and micro of their performances’ (Dokumaci, 2017: 395). To articulate this idea, Dokumaci relies on James Gibson’s (1986) theory of affordances which describes the possibilities of action ensuing from the inextricability of the perception of the self and the environment and the reciprocity of organism–environment relations. According to Dokumaci, in disease (and/or disability) the affordances received by the environment cannot be compared to the affordances made for disease-free, able-bodied persons. In disease the world shrinks, reducing its complementarities and no longer affording a living with ease. In order to avert and accommodate pain (although recognising that not all disabled people have pain or disease), disabled individuals will have to perform and actualise their relations with the environment in order to hold on to the everyday.

In Dokumaci’s commitment to exploring disabled subjects’ lives, she explores the intimate worlds that come to the foreground when the environment shrinks due to disability. Dokumaci finds that since disability is always in relation to someone (or something), people who accompanied another’s experience of disability can also provide, enable or become an affordance for one another, especially where no other affordances exist. ‘People-as-affordance’ involves other people’s properties which can provide new ways of care and understanding (Dokumaci, 2020). Within this framework, ‘being-for and being-with each other’ (Lykke, 2018) become affordances that entwine the experience of living with pain and the companion’s experience of living with someone in pain. In this intimate scenario, ‘care intimacy’ describes ‘how the need for care can be articulated, responded to, and engaged with through intimate and unspoken means as people provide or become affordances in and of themselves’ (Dokumaci, 2020: S203). Care intimacy is meeting the other’s needs and desires, and being ready to support and help the other, willingly.

However, as the author recognises, in living disability worlds (s = in plurality, in difference, in mutuality) sometimes care intimacy from others fails to materialise. There are circumstances ‘where there are no readily available affordances or convenient tools, objects, and infrastructures to respond to their pain, ill health, and bodily particularities’ (Dokumaci, 2020: S105). There are moments in disabled worlds where ‘care intimacy’ cannot be provided and people cannot become affordances for one another, ‘not because an otherwise unimaginable action possibility is co-created but because an already established and socialised action possibility is not undertaken’ (Dokumaci, 2020: S105). There are forms of care that emerge by not pursuing the caring engagement with the other at all, but by letting the possibility of caring go.

To illustrate this, I share another fragment of the shared world my partner and I inhabit:

We are sitting on the couch talking about our next Christmas vacation. We really want to go to the beach, rent a small apartment, make a fire and enjoy the nice weather. We are both really enthusiastic about spending our first holiday season together, so our conversation is really pleasant and charged with a lot of positive energy. I think I get distracted for a second. A WhatsApp message comes in. It is not an important matter to attend to so I reply with a smiley emoticon. I turn my eyes to her in an attempt to keep on with the conversation. I can see how her eyes are abandoning me. By now, I know I am not supposed to touch her since my touch provokes her pain. So, I call her by her name. I see her struggling to be awake, to stay with me. When her muscles are finally alert again, her immediate action is to look for her cigarette case and roll one up. There she is, in front of me, the person I care about the most, and my touch, my words or even more my sole presence hurts her. I try to offer her some relief but my proximity is not enough at this moment. I cannot be of any assistance; I am relegated to being a mere witness of her pain and tiredness. I am just there, in front of the person I care about the most, without being able to provide her with my care.

There are moments where ‘not touching her’ is the only act of care I can perform to alleviate her pain. At this moment, following Dokumaci, ‘not touching’ is an affordance because it is the unrealised potential of care that matters. ‘Care intimacy’ can happen, therefore, when the proximity of care is not performed. While my partner’s environment shrinks due to the force of her sleeping attack and her corporeality vanishes as she fades out, the only way I can help her is by ‘being alongside’ (Latimer, 2013) during her worst moments of pain. However, in the space that opens up between her body and my touch, other forms of care emerge that offer her the possibility to go on, which do not involve human action. There are moments when care comes from unexpected places, bringing into being new ‘caring’ kinship imaginaries (Dokumaci, 2020). Caring kinships make it possible to build disability worlds of care even when human care is not possible or not feasible. Here, I speculate on the different ‘caring’ kinship imaginaries that open up between a disabled body and the non-human touch that allows other forms of care, not involving human presence. Forms of care build up by not performing the act of care, but by the most intimate act of love with non-human companions, disrupting our understanding of both love and care as exceptionally only-human affairs. I introduce the concept of ‘caring matter’ to refer to this form of care – that is, a momentary entanglement with matter, where the body is always-already touched by other beings which give a form of care that humans cannot provide (Méndez de la Brena and Schoenmann, 2021). As such, my use of ‘caring matter’ incorporates a post-human analysis of care that I will highlight and will be further expanded in what follows.

‘Intimate act of love’

Thinking of ‘caring kinship imaginaries’ is only possible by speculating on multiple affective possibilities. It requires imaginative ‘propositions’ for thinking together with, and for, the creation of connections between things that don’t yet exist but may become possible. In other words, a proposition is a speculative sensibility in our engagements with the world, or better said, a speculative sensibility of world-making. Speculating, therefore, is a ‘process of imagination of a very specific kind’, one that does not operate in a vacuum but can ‘move beyond the field from which [it] originate[s]’ (Shaviro, 2014: 55). This means that speculation has a point of departure; it has a context and it is grounded. It does not respond to the unknown but instead it is settled within acts of thoughts. In other words, speculation is situated; it cannot be applied out of a context.

It is widely known that the speculative can be traced back to a long list of feminist scholars and writers of colour working with and through speculative thinking (Isabelle Stengers, Donna Haraway, Octavia Butler, Sun Ra, Nalo Hopkinson and Karen Lord, to name a few, and Chicana writers Rosaura Sánchez and Beatriz Pita). My use of speculative storytelling is particularly informed by Haraway’s feminist speculative fabulation and her crafty formation of knowledge-making and world-making that calls on the factual, fictional and fabulated. This refers to the creation of hypothetical worlds wherein ‘it matters what stories tell stories; it matters whose stories tell stories’ (Haraway, 2019). In what follows, I use speculative storytelling accompanied by photography as visual imaginary to entice the reader with what I call ‘caring matter’. I invite the reader to let themselves feel touched by the smoke that comes out from the frame of the photograph and by my words, since both provide alternative ways of thinking and imagining caring propositions and an affective speculative outcome.

Figure 1.1 Smoking, Dresda E. Méndez de la Brena, 2019, Colour, Paper, 38.74 × 47.63 cm. Courtesy of the artist.

She immediately rolls up a cigarette; she starts smoking and her sleepiness and pain start to subside. In that moment I realise that, in the worst sleeping attacks, it is a cigarette, not me, that can offer her the best comfort and act of care. It is in her worst state that an intimate connection with a cigarette happens. I can see her pain and tiredness going away with every inhalation she takes. I am there; in front of the person I treasure the most, while she is having the most intimate and sensual act of love with a body that is not mine. I am a witness of the more intimate act of love, care and relief between my lover and a cigarette, an intimate act of love I cannot provide.

I wrote this paragraph after witnessing my romantic (queer) lover being loved by her cigarette. As I was watching the smoke coming out of her nose, entwining itself through her clothes, embracing her body, caressing her face, touching her lips, I was witnessing an intimate act of love between my girlfriend and a body that is not mine. I was there, observing how a cigarette offers her the vitality to keep going, as smoking is a ‘vital affordance’ that allows the ‘multiplication of the conditions of living, exactly when and where those existing conditions least afford living’ (Dokumaci, 2017: 408). After the cigarette was totally consumed and my partner’s sleeping attack was over, I started a speculative exploration of the significance of ‘care intimacy’ when care is provided by things other than humans. When human touch is not allowed, there are other forms of care that happen in the more-than-human web of life, which brings maintenance and vibrancy to specific relations, particularly when the environment shrinks and no other person can fit in there to provide it. What happened between my girlfriend and her cigarette was an act of care; a loving connection that revealed to me how, in that particular moment, care was co-enacted by non-humans. In this moment, human care did not disappear but the agency of who provided it was distributed (Bellacasa, 2017).

In ‘thinking with care’ and non-human actants, a conversation with scholar María Puig de la Bellacasa is mandatory. In her book Matters of Care, Puig de la Bellacasa offers a speculative notion of care by asking ‘what does “caring” mean when we go about thinking and living interdependently with beings other than human, in “more than human” worlds?’ (Puig de la Bellacasa, 2017: 13). Puig de la Bellacasa’s speculative project is to approach care as something open-ended where ‘more than human’ beings are both subjects and objects of care in a complex web of interdependencies. The author argues, ‘care is a human trouble, but this does not make of care a human-only matter’ (Puig de la Bellacasa, 2017: 2). By extending care to account for non-human worlds, the author situates care as any act of maintenance of life that places ‘interdependency as the ontological state in which humans and countless other beings unavoidably live’ (4). The author summons ‘matter of care’ to the idea of care in the materiality of more-than-human others and its manifestations in the everyday practices promoted by human and non-human worlds. Interestingly, Puig de la Bellacasa articulates a new re-evaluation of the sense of touch, to rethink the reciprocity or reversibility of care in the living web of care. Thus, care is sustained, distributed and reciprocated by ‘touch’ of some sort. A human/non-human differentiated touch, that is ‘the touch of entangled beings (be)coming together-apart’ in ways that enable response-ability (Barad, 2012: 208) and is aware of the multiple ways to engage with the needs and desires of what/whom it reaches for.

Here, Mel Y. Chen’s (2012) loving episode with their couch comes to mind. Chen works on de-differentiated intimacies provoked by metal poisoning, which led them2 to differentiate an intimacy act of their couch due to the comfort it provided them. In the author’s argument, there are queer socialities or living animacies that disrupt the difference between a body and object. Chen’s body moves beyond its ostensible bounds, generating a space for queer affectivity between non-human and human agents. My partner’s pain moves beyond its ostensible bounds into the midst of (human and non-human) bodies that momentarily care for each other. The use of speculative storytelling and photography as a visual imaginary tell a queer love story that speculates on momentary and contingent entanglements between cigarettes, lungs, hands and air. A love affair with the non-human world, where my partner is always-already touched by other beings which return to her the care that my ‘humanity’ cannot provide. As Barad (2012) poetically states:

In an important sense, in a breathtakingly intimate sense, touching, sensing, is what matter does, or rather, what matter is: matter is condensations of response-ability. Touching is a matter of response. Each of ‘us’ is constituted in response-ability. Each of ‘us’ is constituted as responsible for the other, as the other. (Barad, 2012: 215)

Perhaps a better understanding of the touch of the cigarette can be traced if we once again look at the photography and let ourselves be captivated by my girlfriend’s act of smoking and by the smoke itself. Here, I argue two possible approaches to understand the act of love between my girlfriend and her cigarette: the phenomenological and the new materialistic. The first approach corresponds to the idea that smoking is a corporeal extension of the smoking person in the world. Following the Merleau-Pontyan phenomenological tradition of the body, which goes against the notions of bodily containment, Katz (1999) noted how smoking illustrates how the body is always intertwined with the world. In every exhalation, smoking makes visible the respiratory process, exposing how the body exceeds itself. Consequently, the body is not a contained entity but it extends itself into the things of the world. In smoking, the ‘I will exceed the I’ (Dennis, 2011: 26) and becomes a ‘we’, since by breaking the proper integrity of the body, we breathe one another, we ingest one another. As Chen (2012) writes, ‘I am ingesting their exhaled air, their sloughed skin, and the skin of the tables, chairs, and carpets of our shared rooms’ (209). The I is the world and its content. A world where we are intrinsically always touched by others; always affected and being affected by others. In a phenomenological tradition, the visibility of smoke reveals my partner’s bodily pain being extended to the air, touched by and taking care of it, until it travels from her body to mine. With every smoky breath she takes, her painful body is my own. In every breath I take I ingest her pain. A pain that is ‘as part of me, as not part of me, as a part of the world’ (Winance, 2019: 429).

In a less speculative account of my girlfriend’s smoking, one could argue that the pleasure, relief and love that my partner feels are derived from the feeling of chemicals rushing through her body. That my partner’s relief is the result of the possession of the cigarette and the relations it allows her. However, this approach centres my partner’s body as the sole actant that ‘brings together all of these aspects of human and non-human objects to draw in the pleasures of smoking’ (Dennis, 2018: 72). I step away from this idea by incorporating a new materialist approach to smoking in which ‘smoking pleasure has more to do with certain kinds of confluence, rather than any fixed property within or subjectivity of the agent herself’ (Dennis, 2018: 71). In her new materialist approach to smoking, Simone Dennis (2018) argues that smokers become ‘enwinded’3 in the intra-activity with the air and with the relief this encounter provides. This is only possible if we avoid the option (a) ‘to differentiate between a broadly constituted “environment” or “atmosphere” and humans, and so [refuse] essentialism in favour of relationality, and [(b) acknowledge] the capacity of non-human things – even atmospheres like the air – to impact and influence’. Following this idea, as the air comes out of her lungs, her pain and tiredness are displaced and move beyond her body. The air is embracing my girlfriend’s tiredness in a simultaneous material, affective and aesthetic choreography of queer love and care.

I do not pretend to romanticise love and care. As Puig de la Bellacasa (2010) warns us, caring is ‘non-innocent’, it comes with tension and must therefore be handled with care. Caring is an act that most often involves asymmetry (56) that can lead to acts of love and care of a ‘different kind’ (Weaver, 2013). In the last part of this chapter, I want to explore the caring/love tensions in the smoking-breathing encounter and how this friction intersects with normative and ableist understandings of the smoker’s body in articulations of a healthy future, arguing for a feminist intersectional approach to smoking in relation to disability studies. To this end, I analyse a poem I wrote as part of my personal understanding of my partner’s heavy smoking habits and the perils of a relationship with a dead end.

‘Love is a dead end’

Dead End

(Poem, Dresda Méndez, 2020)

Only for tonight,

you breathed me in

you blew me out.

Can’t tell when it was done,

‘Til I faded off this touch.

Only for the night,

the cigarette remained alight.

Without so much as a second thought,

you penetrated the snow fog around us,

Filled with each inhale

Fallen with each exhale.

Only in the night,

I watch your chest rise.

As you made it harder to breathe,

I fall with the pressure of your lips.

Was it too much?

Cannot leave your lungs for long.

Who’s never smoked for love?


There’s something burning inside you.

Strong. Overwhelming. Suffocating.

Enwinded to relieve the pain

Whilst you reach to find nothing but air.

Dancing in the night,

With each inhale, there is life.

I guess, there is a charm.

Why can’t we say each exhale brings you life?

In endless creativity and stuttering breaths,

in every exhale that brings no end,

a love with dead end.

Smoking and breathing share a complex relationality as well as a hierarchical positionality. Humans (although not only humans) become alive by breathing. Consequently, implicit in the fact of living, breathing is the primal condition of bodily existence (Sloterdijk, 2009). As such, breathing is the quintessential force of life that engages us with and put us in relation to the world (Gorska, 2016). However, breathing is far from being defined as merely an ongoing metabolic bodily action. The vast relationalities that breathing enacts upon the world unfold diverse and heterogenous respiratory interventions that have been of much interest within different interdisciplinary fields of study in the twenty-first century. The relationship between ‘air-and-breathing-bodies’ (Allen, 2020) has been taken by phenomenological studies of environmental exposures, intersectional feminism, interdisciplinary social and environmental justice politics.

When we talk about breathing and respiration as a lived phenomenon in relation to smoking, smoking is usually treated as a menace that reduces the capacity of breathing and, therefore, the possibility of human survival and endurance. In common conversations, smoking is related to phrases such as shortness of breath, breathless, catching one’s breath, out of breath, taking a breath of fresh air. As Górska (2016) points out, ‘while breathing is a force of life, it is also a matter of dying’ (28), and smoking is considered a deliberate act with the capacity to invade the body, via inbound breath, to literally take the breath away. As we are familiar with public health discourses on the dangers of smoking (inhaling nicotine and other toxic chemicals may cause illnesses like heart disease, strokes and lung cancer), breathing also ‘contains a set of ideas, morals, values, and hierarchies [over the act of smoking] that can be drawn into and absorbed by bodies just as readily as oxygen’ (Dennis, 2006: 9). As such, if we pinpoint breathing as the vital source of life, we largely ignore or misconceive how for some bodies which are deemed ‘sick’, to compromise breathing by self-induced air-and-breathing poisoning, more than a menace, becomes the ultimate ‘chemical sublime’ intoxication (Shapiro, 2015). In this sense, if we take Górska’s invitation for adopting an intersectional perspective of breathing as never homogenous and consequently always differently enacted in relation to differently lived circumstances, understandings, capacities, specificities and privileges of who is breathing, we should also extend this comprehensive approach to those bodies that against human normative (in)securities about breathing, challenge the ‘proper’ or the ‘healthy’ aesthetics about it. Ultimately, if breathing is not a homogeneous phenomenon, then nor is smoking. For those for whom the world is a difficult place, smoking is the possibility of performance, survival and endurance. For some, smoking is a survival strategy only possible or meaningful under certain social, cultural, economic and historical conditions. An intersectional feminist approach to smoking has to work towards an anti-ableist vision of survival.

However, this is not easy. The poem I wrote refers to the perils of the smoking-and-breathing encounter. Even when I rethink and re-ontologise the particular vulnerability to the detrimental impact of smoking on her health, the questions that follow are ‘if smoking is ruining [her] health, why do[es] [she] persist in [her] habit? Why do[es] [she] not make a rational, informed decision to quit?’ (Macnaughton et al., 2012: 458). My partner is well aware of the risks and dangers of smoking, but she also knows about the potential of smoking to reduce her sleepiness and her pain in her immediate present. Engaging in smoking and its potentially future damages is for my partner a way to be with me in the present. For me, her engagement in smoking is a rupture of my (linear) temporality, that is, my (normative and ableist) future-oriented stance of being together. In my normative account, our love story has a dead end.

As the reader can assume by now, this chapter was not about our love story, but my lover’s love story with her cigarette. And, in this love story, what is important is to ask what kind of love is, especially given the many ways in which love is neither innocent nor liberatory. Here, I want to bring back Chen’s (2012) analysis of toxicity as more than a simple (social) metaphor but as an agent that does something in the body. For Chen, toxins are queer agents that mediate the ambiguous boundaries between life, death and disability. If (cigarette) toxins violate the very proper intimacies between death and vitality, toxins are a part of queer socialities that are built upon the simultaneity of pleasure and pain. What Chen proposes is a different kind of intimacy, a different kind of love; or using Weaver’s (2013) concept, a love in the form of ‘becoming in kind’. Love that is neither good nor bad; love that can come from the darkest places; love that is sometimes oppressive, dangerous and noxious, but love nonetheless. In loving her cigarette, my partner is not abandoning or neglecting its possible consequences, but she has acknowledged and embraced them instead of living in opposition to it. My partner has learned to make friends with her (present) medical condition, and the (future) conditions of her illness.

Through the development of ‘caring matter’, I have tried to show the importance of speculating on different understandings of care, wherein it matters ‘the ways sick and disabled people attempt to get the care and support [they] need, on [their] own terms, with autonomy and dignity’ (Lakshmi Piepzna-Samarasinha, 2018: 41). ‘Caring matter’ brings with it the possibility to respond affectively to certain caring corporeal-experiences that might be perceived in, for example, the deterioration of health, but that, implicitly, indicate a need for further analysis of the affective intimate relations between objects and people that create the specificity of ‘caring’ in a particular moment. In this way, ‘caring matter’ is a relevant concept for the study of intimate affections between disabled individuals and other-than-humans. It also makes an important contribution to the fields of feminist intersectionality and disability studies, since it stresses ‘caring’ as a multi-layered, multi-shaped and multi-modal arrangement with the material world, even if that implies for those who are standing close to them a different path of care that is defined by not touching, not holding, not caressing, but just caring alongside.


1 In working towards new ethics of describing intimate relations, new forms of authorship-companionship emerge. Through the speculation on my life partner’s disability, we are working together towards new ethics of being there for each other, and materialising new forms of support and help for the other, when possible. I most profoundly appreciate my partner’s loving feedback and allowing me to share our friendship, love and intimate companionship’s experiences. In my words, I find your voice. In your voice, I find myself. Always.
2 They/them are Chen’s pronouns.
3 The word ‘enwinded’ is first used by Tim Ingold (2007, 2011) to refer to the agential properties of air itself – that is, it is not that air has agency; air is agency itself. Air has a power in its own right which refuses to be arranged and enclosed by bodies. As such, air is not contingent to the bodies’ embodiment; rather the air itself enwinds us. Ingold (2007) states: ‘It is as though every breath was one’s first, drawn at the very moment when the world is about to disclose itself for what it is. In this, it is not so much the wind that is embodied as the body, in breathing, that is enwinded’ (S32, Ingold’s italics).


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