1. Introduction

I mobilise the term monstrosity as an embodied critical method and defiant figure acting within discourse about cancer and fertility. Monstrosity is positioned to resist and move against the harmful effects of projected assumptions that all bodies are (and should be) cisheteronormative, that all bodies with wombs should want to become birthing bodies, and that all birthing bodies should be female, feminine, feminised and cisgender. General definitions of monstrosity¹ include malformation, deviations from the norm, or phenomena or entities of frightening size, force or complexity. The critical mobilisation of emancipatory monstrosity in the context of this article emerges from how it indexes bodies and behaviours that deviate from normative modes of being and doing, also from its embrace of insights and pleasures discovered via the cataclysmic experience of cancer. The Abject presents an obvious foundational framework for this paper due to the horror of cancer and the boundary-crossing nature of medicine, biomedical imaging, bodily processes and substances. Julia Kristeva’s psychoanalytical theory in Powers of Horror² analyses representations of women and femininity through bodily ambiguity, threats of annihilation, and the penetration of bodily boundaries. Within the oppression of patriarchy, the feminine is a terrifying force that exists to be controlled and commodified. The term monstrosity indexes an area of feminist discourse concerned with moving against idealised conceptualisation of what a woman is, what gender is, and how people born with uteruses and those who identify as women are policed and controlled as a result. Donna Harraway’s Cyborg Manifesto³ establishes the abject as it relates to liminality, technology, and delusions of purity. The auto-ethnography and practice-based research in this article sits on the cusp of technological bodily emergence and like Haraway’s cyborg rejects fantasies of a ‘whole’ and ‘proper’ self. The term monster is used as a strategy to perceive and evade control within medical systems, and identity where care is disproportionately given/ neglected. Protecting bodily autonomy in an era of increased fascism and conservatism where political and reproductive freedoms are under threat across the world due to political conservatism,⁴ pandering to nationalism, and increased militarism.⁵ Similarly, the ‘reproductive rights of migrant and refugee populations are [also] under severe threat’.⁶ Thus observations and strategies to resist and counter the curtailment of hard earnt reproductive rights are crucial.

In this paper I discuss my rejection of reproductivity and frame my loss of fertility as an escape from the pressures of childbearing and patriarchal capitalistic tyranny while being treated for cancer via idealised cisheteronormative notions of the body. Barbara Creed’s ‘Monstrous Feminine’⁷ and in the posthuman and more-than-human texts of Braidotti and Haraway, non-normative complex and messy representations of more-than-woman queer entities challenge forces of domination and oppression. This paper frames monstrosity as emancipator because it is rejected by and resists coercion by cisheteronormativite societal and moralistic pressures. Monstrosity is queered in this respect. In Queer Phenomonology⁸ Sarah Ahmed discusses orientation as ‘a dynamic negotiation between what is familiar and unfamiliar’. Paul Preciado’s Can the Monster Speak⁹ explores how human subjectivity itself can be a cage. Queerness/queering is an effective framework through which physical bodies that deviate from heteronormative standards are simultaneously harmed by social structures and free from them. ‘Emancipatory Monstrosity’ in my framing of it moves against cisheteronormativity via processes of embracing that which acts beyond us. Monstrosity is a queering power: ostracised, grotesque, and unnatural to the patriarchal world order.

The abject – in pregnancy, sterility, disease, queerness and womanhood- is a broadly explored theme in art and media. The abject in art encompasses a broad range of artists from Francis Bacon to Mona Hatoum, and many artefacts and artworks may be considered abject based on being made from or containing certain materials such as human or animal tissue, remains or waste. Depictions of the body, health-inducing charms, medicines and incantations to bring health¹⁰ broadly relate to discourse about the body, the abject, technology, health, fertility, death and nature cultures. Indeed, many examples of artworks relate to the themes in this article which can only be mentioned in passing such as Palaeolithic figurines, and more than human representations of the body such as Frida Khalo or Juliana Huxtable who both (differently) delve into the political possibilities of medical and animal hybrid self-portraits that explore sexuality and gender. The wax models of dissections by Joseph Towne and Eleanor Crooke, and gore of horror films such as those explored in The Monstrous Feminine bring flesh and the abject in to very different socio-political and cultural contexts. The multi-gendered multi-sexed hypersexual insemination power of the H. R. Giger’s Xenomorph threatens (cis)man himself with pregnancy. The ‘monster in utero’¹¹ has enabled rich critical examination of patriarchal anxieties including threats to masculinity, sexual deviancy, and annihilation from multiple fronts: extinction of the individual and the parasitism of pregnancy. Corporeal matter, the abject and more-than-human collaborators in artworks involving fungi, bacteria or code also have a bearing on the matter, material and aesthetics of medical/bodily imagery that constitute the affective power of bodily abject art. Performance artists Stelarc, Marina Abramovich and surgically altered Orlan directly work with the boundaries of the body. These artists differ in how they relate to technology, politics, power and gender. The ‘carnal self-portrait’¹² and surgically formed Reincarnation of Saint Orlan work offers feminist materialist inquiries into the shifting of identities through medical technology. Haraway describes how to ‘become-with each other, compose and decompose each other, in every scale and register of time and stuff’¹³ is necessary to resolve the issues of our time. The re-figuration of the human body offers scope to explore this through creative practice. In terms of biomedical imaging, Silvia Casini¹⁴ explains that ‘the category of transparency in imaging [being able to see into the body] functions both as an ideal to pursue and as an ideology by which to navigate our anxieties related to our bodies’. Given our curiosity and fear of our interiority even when accessed from a safe distance we experience ‘swings between defiguration and refiguration’.¹⁵ Mona Hatoum’s endoscopic 1994 and 1996 performances Corps Étranger (Foreign Body) and Deep Throat use technologically mediated encounters with the inner self to call into question issues relating to power and who has access to us at our most vulnerable. Biomedical images confront us with the abject as personal and intimate. The artistic appeal of medical imaging stems from how it accesses the body from within. Hepatophagy (2008) is a biomedically mediated self-investigation by Caitlin Berrigan involving a chocolate truffle cast from a 3D MRI of the artist’s liver¹⁶ which members of the public are invited to taste in an act of performance cannibalism.

Cancer stories in art are enormously diverse, as are those concerning infertility which are the subject of many artworks, explorations and creative practices beyond the limits of this paper.¹⁷ Artist Carole Ellis as one example discusses that she ‘wanted my work to tell a story. When anyone is diagnosed with cancer, they have their own unique and intensely personal story’.¹⁸ The Misbehaving Bodies exhibition at the Wellcome Trust in 2020 presented work by Jo Spence and Oreet Ashery. Spence’s confrontational photography of her treatment for breast cancer in the 1980s and Ashery’s exploration of loss and ‘the lived experience of chronic illness in the digital era’.¹⁹ These present relevant perspectives that critique medical systems for their lack of humanity and domination over bodily autonomy. The exhibition title ‘misbehaving’ relates to ‘untypical’ and the ways in which moralistic value judgments are associated with non-conforming body-types. The exhibition explored ‘how illness shapes identity’²⁰ and how this reshaping changes how we are treated. My focus on corporeality and MRI concerns ‘the collapse of the border’²¹ between the body and its surroundings and in terms of my auto ethnography the collapse from expectations that I should want to conform to cisheteronormative nuclear family narratives. This paper emerges from my PhD research, which was not about in/fertility but explored corporeal matter through material and embodied practice. In the second year of my PhD I was diagnosed with breast cancer; through this experience, my body became an enactment of the very themes of the abject, technological enframement, and bodily materials that were at the core of my research. However this experience also brought me into contact with the issues of in/fertility and cancer and who has access to it, is encouraged to pursue it and why. I use auto-ethnographic ‘methods of self-reflection and recollection’²² to present my experiences as epistemology via ‘narrative dialogue, self-study/autobiographical and memory work’. My autoethnography draws from my experience of cancer treatment and highlights how the casual insistence that I should want to pursue fertility led me to explore some of the many inequalities relating to fertility. This article positions the body/self as an entity always in flux, embodied, materially embedded and relationally formed in an ever-changing state of becoming whereby subjectivity is ‘in transition, materially embodied and embedded yet processual’ while being ‘composed of multiple overlapping fragments’²³ which is captured through creative practice.

2. Methodology through practice based research

My PhD makes use of sculpture, weaving, illustration and painting as cartographic methodologies of drawing, painting and collage to connect, re-connect, trace and chart the process of MRI, my bodily story of cancer treatment and my research process. In the second year of my PhD I was diagnosed with stage 2a oestrogen receptor-positive (ER+) breast cancer which uses the body’s oestrogen to grow. I began treatment in 2019 which continued throughout the Covid-19 pandemic and ended in 2022. I was prescribed surgery (lumpectomy and lymph node removal), radiotherapy which ended two weeks before the UK national lockdown in 2020, followed by endocrine treatment (Zoladex – which brings on instant menopause) until 2022. I experienced two more investigative surgeries in late 2022, no longer menstruate, and have been prescribed tamoxifen until 2030. Tamoxifen is an oestrogen suppressant in breast tissue, it interacts with fertility indirectly, can damage foetal development, and has numerous side effects including menopausal symptoms, temporary menopause, uterine changes and in rare cases it can cause uterine cancers.²⁴

During my diagnosis and treatment for cancer I was subjected to multiple tests and monitoring: biopsies, CT, MRI and other imaging modalities. My PhD being about MRI and corporeal matter meant that the subject matter of my survival was familiar. My experience of cancer deepened my intimacy with my practice and the themes and technologies of my PhD. This shifted the affective power of my research from what originally felt like a fringe interest to a practice through which my existential ontology was emerging. Corporeal matter as perceived by MRI ‘straddles definitions of substance, organism, subject, and object’.²⁵ MRI interacts with the body through nuclear magnetic resonance and creates biomedical images using electrodynamics, signal analysis, and mathematical computation. MRI brings us into contact with the body as multiple. Our ontology during an MRI scan emerges as multiple: as a patient, a person with hopes and fears, as a biological environment, as an ecology of tissues, pathologies, and microorganisms, materials, substances and as an assemblage of biochemical reactions, embedded in medical social and cultural systems.

MRI reminds us that our bodies act beyond us.²⁶ This enabled me to develop embodied approaches that examine how MRI data is organised and codified. In 2018 – a year before my cancer diagnosis – I took part in volunteer MRI trials at the Cancer Centre at UCL. This study looked at peristalsis indigestion. On the monitors I could see my organs pulsing autonomously. This had a profound impact on me.²⁷ Perceiving the inner functions of my body, acting beyond me and composed of squishy and moving organs, embodied the concept of the body as multiple: I saw myself as molecularly, atomically and sub-atomically composed as well as emotionally, interpersonally and socially. Figure 1a shows a series of MRI images from these studies and reveals the abject monstrosity of the squishy inner world of my body at work. They connect me to an evolutionary heritages to other creatures and times. I requested access to the data for use in my PhD and for artistic purposes. Using the data and biomedical imaging software I created a true-to-scale CNC-milled sculpture shown in Figure 1b. The dense orangey-pink foam I used resembles cavernous windswept canyons yet is uncannily flesh-like. The volunteer trials did not require an intravenous contrast agent and thus there is no way to tell if any early stages of my cancer were in my body, the data or my sculpture in 2018. Annemarie Mol in her book The Body Multiple discusses how medicine ‘attunes to, interacts with, and shapes’ bodies.²⁸ Following my diagnoses my relationship to MRI started changing due to its role in identifying the extent of my disease. The way in which ontologies change and emerge through medicine is part of what makes medicine what it is. Through this the abject resurfaced and my data sculpture began to feel haunted by the ultimately unknowable status of this data, did it or did it not contain traces of my cancer? The acceptance that cancer is part and parcel of being a multicellular entity that connects us to archaic cellularity, evolutionary ancestry and diversion has guided my exploration of the emancipatory dimensions of monstrosity. I began to reflect on the contradictions of treating cancer in a world that is constantly polluted with carcinogens from the military industrial complex, extractivism and capitalism. The cancerous monstrosity within me, that had mutated and grew from my own cells, offered revelations in terms of our deep evolutionary cellular continuity with non-life and brought to the fore concerns about ecological contexts, extractive labour and toxic work cultures that grind us to dust, harm health and strip us of our collective agency. Cancer also employs an extractivist capitalistic method of growth at all costs of its own ecology.

Figure 1a

MRI data from trials at the Cancer Institute, 2018.

Figure 1b

CNC-milled data sculpture, 2019.

The assumptions about my preferences made by medical professionals shaped my experience of cancer. As cancer patients we can sign all the consent forms in the world but still experience alienation from our own monitoring and medicalisation. During my cancer treatment the status of my fertility was discussed – fertility is often considered very important to the patient as the medications for cancer seriously impact and damage fertility.²⁹ I was 34 at the time and was surprised how often my fertility was brought up, especially given that I made it very clear from the beginning that I did not want fertility treatment nor had I ever desired pregnancy. Cancer treatments brought me into contact with the possibility of being free from projected ideals of parenthood. Reduced/in/fertility were emancipatory experiences brought on by treatment. While I wasn’t overtly pressured into anything, and I understand that people do change their minds and detailed conversations are an important part of care, I had these conversations and I did make up my mind. However, the professionals caring for me kept questioning my decisions – it felt like I was not believed. Paul Preciado³⁰ discusses how technological and pharmaceutical industries commodify and control desire and identity. Speaking from the angle of transition, Preciado‘s exploration of the biopolitical forces show intersections between surgery, medicine, political history of reproductive and sexual technologies whereby drugs/medicines and media combine in a cyborgian formulation of desire and identity. Benjamin Dalton³¹ describes similar issues where ‘medicine imposes normative constraints on the body whilst simultaneously offering potentialities for bodily (re)invention and queer emancipation’.

I experienced regular questioning regarding my choices, sometimes from clinicians not directly caring for me. These experiences and my preferences to celebrate infertility are not mainstream and thus underrepresented in conversations around cancer treatment found on resources such as Macmillan,³² NHS³³ and Maggie’s.³⁴ While this is seemingly for all the right reasons, for protecting and supporting people who do want to have families and receive fertility treatment, it made navigating cancer frustrating. The repeated questioning illustrated some of the ways in which my bodily autonomy was under scrutiny and made me think about the ways in which the bodies of birthing people and what we do with them is not wholly up to us, even when we have expressed our preferences. Feminist new materialisms³⁵ and practice-based research methods³⁶ informed my reflective and creative practices. The emphasis of corporeal knowledge through my own experience of illness and making, the mutual interrelation of matter and meaning, and reciprocal ethical relationships between humans and the non-human helped guide my making. Through my PhD I developed practices that intersect materially with MRI which I did by centring around two key interfaces in the MRI process: the body-machine and analogue-digital interfaces. Forces act across these interfaces (or gaps/boundaries) and changes occur to both bodily and informational matter across them. Bodily materials include water, proteins, lipids and many different biochemical and biomaterial agents. During an MRI a strong magnet interacts with a property called spin which is possessed by all electrons and protons. To place my practice materially within the process of MRI I created sculptural ‘phantoms’ that investigated the interface between body and machine. These were semi-figurative constructs informed by how the body interacts with the physics of MRI. A phantom is the name for a scientific device used to calibrate and test MRI scanners and other biomedical imaging modalities. Gear et al³⁷ describe medical phantoms as being designed to imitate anatomical structures in an MRI scanner. Phantoms are made of materials that mimic living tissues³⁸ and behave like or mimic specific tissue types and anatomical structures in an MRI scanner. My (artistic) phantoms were crucial in investigating the body-machine interface in my research. They were materials-led objects that act like a body at body-machine interface and can be detected by MRI as if they were a body. Figure 2 shows the collection of phantoms I made. They are recognised and treated as scientific subjects and came to inform my understanding of my personal experience of cancer and medical treatment’.³⁹ Tissue-mimicking materials (TMMs) provide researchers with in-depth information about MRI images to the body in the scanner.⁴⁰ Examples of TMMs include saline, fats, silicon,⁴¹ PVC, gels and waxes⁴² and distilled water, saline, antiseptic, and gelling agents. I made novel use of phantoms as art objects in my PhD. I collected ingredients such as plant matter, cocoa butter, oils and fibrous food items such as sponge and pineapple, Figure 3 shows phantoms-in-progress and includes sponge and latex. I arranged my ingredients as small amalgams of material adhered together using glass, resin, plastic tubing and plasticine; examples of this can be seen in Figures 4a and b. I began to call the material amalgams that constituted my phantoms organs and encapsulated them into alginate moulds containing wax or resin as seen in Figure 4c. Finished ‘body proxies’ or phantom in wax is shown in Figure 4d. Phantoms are cyborgs due to their ability to represent but never be an organic body.⁴³ I wanted my phantoms to diverge from the homogeneity and control of scientific devices, and to become bodily. Cancer is a divergence, my preferences in terms of treatment and fertility were divergent. Through these materials I could create something ‘beholden to specific materials and collaborations’⁴⁴ that emulated how bodies are ambiguous, diverse, complex, messy, and fleshy. The ‘horror within’⁴⁵ transgresses ideas of a whole and proper self as does the penetration and dissolving of boundaries between the inner self and the outside world. My phantoms were able to do the same and confront me with the materiality of my tumour, their ingredients also slowly decay over time. Through this my practice-based research materialised how I was processing my experience ‘produced in practice’.⁴⁶ The phantoms I created (both pre and post cancer) sought to emulate ‘mutants, cyborgs, monsters, and other alien life forms that do not conform to our traditional and fixed notions of identity and gender’.⁴⁷ When making phantoms I would draw on Bennett’s⁴⁸ ‘vibrancy’ in my selection of TMMs and consider how ‘bodily’ they are from the viewpoint of the scanner that form an account of materiality and corporeality that is both ‘too alien and too close’. Figure 5a and b show details of sponge and latex phantom organs that I made mimic bone and marrow. They resembled the description of the tan-pink tumour in my pathology report – confronting me with what my tumour might have looked like. My phantoms were scanned and treated like scientific subjects at the Francis Crick Institute. Figures 6a and 6b show how the phantoms entered the scanner. They were also scanned at the Future Technology Centre, Portsmouth as shown in Figure 6c. Feminist new materialisms such as Jane Bennett’s ‘vital materialism’⁴⁹ where materials, practices and creative acts made it possible to explore the potential of an art object as a scientific device – this nurtured a sense of parity between my work and myself. The fact that aesthetic elements of my phantoms reflected the description of my tumour in my pathology report and the affective power of internal organs as seen on the monitor as shown in Figure 6b and c rendered them uncanny. The matter and material I make my phantoms from are carefully selected for what it shares molecularly with corporeal matter. Biomedical images being of the body imbue them with abject symbolic power where ‘the artwork itself and the surrounding practices are research’ so that practiceenables insights that operate through specialist knowledge and insights.⁵⁰

Figure 2

Phantoms.

Figure 3

Phantom making.

Figure 4a

Phantom organs with latex, foam and sponge.

Figure 4b

Phantoms organs with plasticine, latex and plant matter.

Figure 4c

Phantom building using alginate mould and wax.

Figure 4d

Finished phantoms.

Figure 5a

Phantoms mimicking bone with cellulose sponge, latex and plaster – similarities to my pathology report.

Figure 5b

Phantoms mimicking bone marrow with cellulose sponge, gelatine, latex and plaster.

Figure 6a

Phantoms being scanned at the Francis Crick Institute.

Figure 6b

Phantoms in the insertion tube, ready for scanning.

Figure 6c

Phantoms being scanned at the Future Technology Centre at Portsmouth.

In Reopening the Black Box of Technology Artefacts and Human Agency, Jannis Kallinikos⁵¹ explores how ‘technology defines a domain of reference and organizes and codifies knowledge and experience within it’.⁵² The Merriam Webster online dictionary describes a black box as a ‘complicated electronic device whose internal mechanism is usually hidden from or mysterious to the user’⁵³ – this makes it a type of system that we engage with through inputs and outputs without an understanding of the internal operations of its use, yet output are high stakes. We find ourselves immersed by black-boxed technologies. We cannot access their making or function as they are designed out of our reach – biomedical imaging and medicine are no exception.

Computational technology is powerful and affecting, it weaves itself into our behaviour and ideas via digital media and operates as a tool of control and surveillance increasingly contributes to the formation of our subjectivity. We are largely isolated from how technologies such as MRI works even though our ongoing medicalised ontologies unfold, emerge, from and depend on them. I developed a weaving practice as an embodied method to investigate the mathematics, geometry and computational processes in converting analogue signals into a digital MRI image – the analogue-digital interface. Beginning with illustrations and diagrams based on the geometric and mathematical properties necessary to signal analysis and Fourier transforms – frequency, amplitude, phase, sequence, precession, signal-to-noise ratio, real and imaginary numbers as seen in Figure 7 – I was able to begin a process of “recoporealisation”. I then translated my illustrations into weave drafts as seen in Figure 8. Figure 8 includes a map with diagrams I refer to charting the ‘body-loom assemblage’ in the background. These were then woven into textural patternings shown in Figure 9 resulting in hand-woven, re-corporealised, deconstructed reconfigurations of the informational transfers that take place at the analogue-digital interface. Weaving to explore this interface enabled an exploration of the body and labour which brought MRI back to the body through bodily work. Lumpectomy, lymph node removal and radiotherapy can cause a reaction called cording or axillary web syndrome (AWS) which resembles tight rope light tissue, or ‘palpable cords in the axillary region’ that restrict movement.⁵⁴ This resulted in functional disability in my left arm which changed how I access weaving, altering and influencing how my weaving itself materialised. One of the ways of breaking down the ‘cording’ is to move the arms, so while there were therapeutic effects my movement was restricted. The weaving itself is enacted with the loom and functions as its own body–machine interface, which I articulate as a ‘body-loom assemblage’ in my research, illustrated in Figures 10a, b, c and d. These illustrate the metabolic links between myself and the loom. Bodily labour re-corporealised data through what I refer to as ‘woven work’.⁵⁵ Thinking, making and acting as an assemblage brought this complexity together. The abject occupational injuries in factories, horrors of fast fashion, exploitation, enslavement, and pollution in textile industries were factored into my positioning via the abject nature of woven-work. The shared material and technological lineage between the loom and the computer, the gig economy, and relevance of textiles in medicine and in fertility are themselves part of an assemblage⁵⁶ and were examined via my post-digital exploration of MRI through weaving.

Figure 7

Signal analysis geometry illustrations, patterns created to understand the analogue-digital interface.

Figure 8

Weave drafts and research map showing illustrations of how the body and loom interact and a colour swatch for yarns that matches the lab colours.

Figure 9

Woven work: a deconstructed reconfiguration of the computational and mathematical processes in MRI.

Figure 10a

Body-loom assemblage beam and hand.

Figure 10b

Body-loom assemblage hands and warp.

Figure 10c

Body-loom assemblage leg and pedal.

Figure 10d

Body-loom assemblage hands and shed.

3. Reflection: autoethnographies during cancer and unequal access to fertility treatment

My PhD was not about infertility or cancer, rather it explored MRI and corporeal matter through my creative practice. My encounters with fertility during my cancer treatment were the personal context from which my PhD developed. Through practices of re-corporealisation, the art practice developed during my PhD explored corporeality and the philosophical concept of the abject as crucial to our subjectivity. In the collection of essays The Cancer Journals first published in 1980, Audrey Lorde describes the ‘pressures of conformity’⁵⁷ experienced in daily life. These were reflected in the anxiety and projections I experienced during my treatment: it felt like there was an expectation that I would be sad about losing breast tissue and fertility as this is a common source of trauma for many patients. These losses were affirming for me because they materialised as a bodily rejection of cisheteronormative expectations and pressures. It is true however that the world needs more diverse families and queer, trans and lesbian families. I am curious about how my identity as a white, slim-built, petite person influenced how I was treated. Queer, butch and trans individuals as well as People of Colour and Indigenous people seeking fertility treatment encounter many challenges and deterrents on the basis of perceived notions of what a ‘mother’ should be and look like.

Families and pregnancies are not intrinsically heteronormative – there is a queerness to gestation and birthing that I must honour and acknowledge to fully contextualise my position. Queer and diverse family structures and practices of becoming a parent are vitally important to celebrate partly because of the current political turmoil and existential threat from increasing populist, conservative, fascist and essentialist views of the body and population. The threat fascism poses includes an increase in control and policing the bodies of birthing people and its desire to quell and erase diversity. Flattening complexity and battering dissent (or divergence) is a blatant objective of fascistic ideology which makes this precursory point I am trying to make a crucial, existential concern because of how it threatens diversity in ecology, culture, society, and humanity. In an interview on the podcast Upstream, author and professor Kristen Ghodsee points out how the pro-nationalist obsession with birth rate and (so-called) traditionalists get it so very wrong: that they have forgotten and ignore other diverse models of being and becoming a family and neglect the multiple (ancient and future possible) stories about how we can support future generations.⁵⁸

Indeed, the ecology of human culture needs more non-nuclear, queer and trans families. Rejecting fertility treatment was emancipatory for me personally, but obviously LGBTQ+ people desire and deserve to birth and are vital to nurturing broad, complex, diverse perspectives into the future. Fertility treatment and care for LGBTQ+ is therefore vital. Ghodsee illustrates how cis-heteropatriarchal, monogamous marriage and nuclear family structures justified through the idealised bi-parental care of biological children are not necessary for a family to be legitimate or legitimised. The nuclear family is a historical product of organising society and social relations that has been nurtured to serve capitalism and exploit women.⁵⁹ Ghodsee argues that there is nothing necessary or fundamental to family in the deliberate and intentional narrowing of romance, parenting or children. The pressures Ghodsee describes as having experienced under capitalism include ‘thread bare’ social safety nets in the public sphere and community.⁶⁰ Not to mention that the automatic expectation for women or birthing people to provide care, domestic labour and to raise children merely because they love their children is a horrific and insidious way to undermine the challenges of this labour – the whole of capitalism would after all collapse without it.

Assuming that free domestic labour is a given, serves the capitalist system. There is a rich history of social critique of these dynamics. In Caliban and The Witch⁶¹ Silvia Federici’s social reproduction theory lays out how the knowledge of childbirth traditionally belonging to the midwife was taken away and punished during the witch trials. This was linked to the mechanisation of the body which both justified domination and control of women’s bodies and the enslavement of colonised people. Reproduction and family as a social technology of production and control for providing workers, people to enslave, and controlling landownership through inheritance forms part of such debates. Emily Callaci lays out a related argument in Wages for Housework⁶² and Adele E Clark together with Donna Haraway support an approach of making ‘kin not population’,⁶³ expanding communities of care beyond biological kin. Their argument is supportive of population decrease while clearly rejecting the racist and ableist arguments peddled by ecofascists.⁶⁴ In Everyday Utopias: Better Ways of Living Equally⁶⁵ Ghodsee highlights how humans are diverse and creative, flexible and adaptive – this is what defines our evolutionary present and potential – and it follows from this that there are multiple ways of being and becoming a parent that should be accepted and explored by people to counter the extreme expectations of capitalistic parenting. Haraway’s approach to ‘Making Kin in the Chthulucene’⁶⁶ and Ghodsee’s post-capitalist families offer multiple possibilities beyond the nuclear narrative. All this, to make the point that Queer families (and queering family) is vital. Humans are creative creatures and creative problem solving is part of our survival and culture.

My experience of cancer gave me some insights into how in/fertility care is not experienced equally across demographics. Given the repeated questioning of whether I wanted fertility treatment and “are you sure?”, I questioned why it was so important to the professionals to repeatedly check that I knew what I didn’t want. I asked why they kept repeating these questions and the answer I got was along the lines of “people sometimes change their mind”. I responded with “I know” and “I won’t” and “that’s a separate issue, people can change their mind and deal with their own decisions”. I wondered why patients can’t just be met where they are at, I have no doubt that these questions came from a place of authentic care and concern but being asked the same questions at different points in treatment after turning fertility treatment down was concerning. Having fertility treatment before having cancer treatment includes hormone injections for stimulating follicle production⁶⁷ and an intensive period of other interventions to collect eggs and preserve them. Further down the line multiple options for assisted conception are usually offered to cancer patients depending on the patient’s needs. This sometimes includes more hormonal intervention, technologies such as intrauterine insemination (IUI) and in vitro fertilisation (IVF). Given that I had a hormone receptive cancer, egg extraction would have included risks to my health and delays to the start time of my cancer treatment. On one hand I was being pressured to make decisions about my treatment quickly and on the other taking time out of treatment for fertility was deemed as perfectly reasonable. I understand that the doubts of the professionals in my medical team were grounded in the fact that due to my age there would be a point of no return and in the fact that some people do change their mind. This doesn’t change the fact that patient choice should be taken seriously, including a change of heart (even in cases where this is too late). What I know is that I made my preference clear and the repeated questioning caused me distress.

I was excited about welcoming scars, that could remind me of what I could overcome. I was prescribed breast-conserving surgery, a type of onco-plastic surgery where a tumour is removed and the breast is reconstituted to have a symmetrical form. The abject relates to processes of separation from norms and rules in society and morality; the abject plays out via bodies that are considered to transgress social norms. My choices in terms of my treatment and my body itself leaned in this direction. I asked why I couldn’t just have a lumpectomy or mastectomy instead, but breast-conserving onco-plastic surgery was discussed as the better choice for my health and a surgery that would have “better” outcomes. Queer theory, the abject⁶⁸ and monstrosity in my phantoms and weaving were increasingly important in showing me how I could understand my own positionality. It felt as though a heteronormative body-type and narrative was expected from me. I wasn’t encouraged to take the time to think about what surgery I wanted but I was encouraged to take the time to think about fertility. Some of the details of breast-conserving surgery were omitted in the description of the process and I discovered I had staples in my breast tissue following the surgery a year later when I asked to see my mammogram data. While weaving I was aware of how the movement was helping with the cording but the staples were also pulling on the scar tissue and I was unaware of their presence. I wondered about breast conserving-surgery: why was this prescribed to me as “better” – better for who and how when it involved staples and after I had made it clear that I was happy with asymmetrical breasts.

My team of wonderful nurses and doctors seemed to becurating my treatment via a bodily identity that was not for me. They didn’t believe me when I expressed my embrace of monstrosity. Clearly, structural, ideological forces were at play. How did my identity as a then 34-year-old, white, slim-bodied, feminine person factor into my treatment? Many people wish to preserve as much as they can of their former selves during cancer, which is very important to respect. Respecting patient choice for surgery that keeps breasts symmetrical and nipples intact is important. But my choice for monstrosity should also be respected and taken seriously, I didn’t know how to reflect on what was happening while in such a vulnerable state. What appears to be the case is that western medical hegemony wishes to reinforcean idealised bodily type and type of function, and assume that this is default and desired. This reinforces the idea and material experience that some bodies are considered more human than others. Treatment options based on idealised and sexualised visions on what a ‘healthy’ birthing body and a woman should look likewere materialising in my treatment plan. Would my team be accused of being neglectful if I had been given a mastectomy, or offered an asymmetrical lumpectomy? I was not seeking mutilation but seeking treatment that would not hide what my body was going through. As mentioned above, having cancer confronted me with my multicellular ontology, that the possibility of having cancer and it emerging from within me was part of being a multicellular entity. When I made my phantom sculptures post-diagnosis I reflected on the body as a multicellular entity constituted of specialised cells that emerge with, as part of, and in continuity with, a lineage of ancestral organisms both prokaryotic and eukaryotic. Making phantoms with bodily divergence as shown in Figures 2, 4a – d, 5a and b.

It is well established that the rhetoric of health can have harmful effects. As well as the extractive nature of the wellness industries, medical racism, transphobia and fatphobia are persistent issues that push patients to ‘question both their sense of self and their rights to adequate health care’.⁶⁹ Cancer treatments vary and our treatment in medical systems is influenced by how we are judged or perceived via the institutions that are supposed to hold us and keep us safe. Nanako Hawley et al. identify several factors of fatphobic related stigma where patients are devalued and denigrated in their review titled Patient perspectives of weight stigma across the cancer continuum.⁷⁰ The assumptions projected on to patients including those regarding fatphobia are problematic in multiple ways. In a study based on how the outward appearance of queer people seeking fertility care impacts how they are treated, Michelle Walks’s 2013 doctoral thesis Gender identity and in/fertility illustrates ‘the cultural fetish that links femininity with “female”- associated reproduction’.⁷¹ This pattern of treatment affects and disaffirms the lived experiences, ‘the reproductive desires, choices, and experiences of butch lesbians, transmen, and gender queer individuals’.⁷² Walks’ study illustrates a disconnect between presenting as masculine and the lack of understanding and denial that masc or butch can be maternal. This has many consequences relating to my experience but also to both cis and trans men who mother (- the verb). It also highlights the importance of presenting diverse reproductive perspectives, experiences, desires, and choices – the need for medical professionals not to make assumptions about people seeking fertility treatment based on how masculine, butch or feminine they present, or treat patients as less interested in fertility based on highly gendered and sexualised assumption of what a mother ought to look like e.g. that a more feminine looking person is naturally more interested in fertility treatment.

Kirubarajan et al. conducted a systematic review of patient and provider perspectives on Cultural Competence in Fertility Care for Lesbian, Gay, Bisexual, Transgender, and Queer People whereby LGBTQ+ individuals were found to face ‘unique barriers in fertility care, as described by both patients and providers’.⁷³ This review highlighted the disparities regarding both access to and satisfaction with fertility care among this demographic. The subjects of this review are referred to as ‘‘‘sexual and gender minorities’’ (SGMs)’ who experience barriers including stigmatization, gender dysphoria, assumptions of heteronormativity, homophobia and psychological distress.⁷⁴ The review found that in ‘larger urban centres, studies have noted that lesbian, gay, bisexual, transgender, and queer (LGBTQ+) populations are among the fastest growing users of fertility care’.⁷⁵ The review emphasised the need for tailored advice and education for SGMs’ regarding the safety and experience of fertility care. The majority of promotional and educational materials about fertility are being targeted toward a heterosexual, cisgender population that assumes heteronormative people are the only kind of people that use, need and desire this care. Due to the hormonal, affective and experiential nature of fertility treatment the review recommends ‘targeted resource and information handouts that are specific to LGBTQ+ individuals’ and for ‘fertility preservation for transgender people before initiating hormone treatment, as well as surrogacy/gamete donation for same-sex couples’.⁷⁶ The word targeting is necessary in terms of creating specific provision for diverse LGBTQ+ patients with diverse bodies, lives and medical needs. An expansion of existing support is needed. Intentional and directed inclusion would be more effective than simply assuming gender diverse people can ‘see themselves’ in cis centric advice. The meticulous details of care and support need to be presented instead of systems that project unhelpful universalisms and treat patients like their differences do not matter.

Kirubarajan et al also carried out a qualitative systematic review of the barriers experienced by Black, Asian and racial/ethnic minority groups to fertility care in predominantly white western healthcare systems. Barriers included ‘stigmatization of fertility care, lack of infertility knowledge, language barriers, discrimination, and lack of institutional trust’.⁷⁷ This speaks to how we are not equally human in fertility and healthcare systems. The outcome resulting from these barriers is decreased access to fertility care. Similarly to the previous review, this highlights how important it is for fertility providers to not inadvertently stereotype patients or rely on blanket assumptions. In this review Kirubarajan et al suggest an ‘open-ended approach to cultural humility’ that can account for preferences for traditional medicine, religious cultures and beliefs, without blanketing out diversity and complexity into an obscure white European universalism. Clearly, more research is needed ‘to better understand underrepresented populations and the intersectionality within fertility care’.⁷⁸ In Erica Brooke Rosenberg’s thesis on Racism and Reproductive Injustice in the Black, Indigenous, People of Color Community reflections include that as ‘a society hoping to move towards a more equitable and equal future, conversations around race and health must acknowledge the past injustices of history’⁷⁹ and the impacts this has on people’s lived experiences. Rosenberg illustrates how ‘history, education and economics are all barriers that impact health’⁸⁰ generally and these have a long-term, drawn out, considerable impact on health, particularly that of BIPOC people. Rosenberg recommends that we ‘openly discuss racism using cultural humility’⁸¹ to nurture a future where fertility is genuinely accessible to all. In other words, the acknowledgment of difference, not applying universalist outlooks, the appreciation of difference and its material reality and cultural importance. Indeed, as Rosie Braidotti says in an online lecture we are not equally mortal, ‘we don’t live and we don’t die in the same way’⁸² as long as classism and medical racism exists. This is not a natural state of the world but one imposed on us by deeply and subtly biased and racist social and medical systems. Audre Lorde described the ‘loneliness of difference’ experienced within healthcare specifically framed as a Black lesbian cancer patient. She mentions ‘secret fears’ relating to cancer as dynamic politicised and material processes where agency is continually being taken from her. Power and power differentials like those discussed in the texts discussed above as well as the affective power of ‘the connection between fear and political authority’⁸³ shape our experiences of the world and access to essential and life-enriching rights, infrastructures, healthcare and privileges. Due to our multiple, ever changing subjectivities we are not treated by the power structures in society as equally human. The existing inequalities in medical systems highlighted by covid-19⁸⁴ and pre-existing and sustained medical racism,⁸⁵ increase mortalities for Black, Indigenous and Asian people and those of the global majority.

Much like cancer, infertility is a diverse, complex experience that is socially, materially and historically emergent and embedded. Additionally, the voluntary and involuntary childlessness that (sometimes) come with infertility have their own networks of stigma and responses to them.⁸⁶ In our era of late stage capitalism characterised by ‘neoliberal revenge, globalisation and financialisation’,⁸⁷ philosopher Rosi Braidotti describes the underlying mood of the pandemic and world post covid-19 as affective⁸⁸ describing an ‘intense sense of suffering alternating with hope, fear unfolding alongside resilience, boredom merging into vulnerability’.⁸⁹ Hematologist and philosopher Ben Chin Yee advocates for a medical epistemology that doesn’t depend on ‘population-level data’ that averages out ‘disease as statistical associations at a population level’.⁹⁰ Clinical trials are not the sole epistemic authority in medical knowledge nor effective solely as a singular research heuristic. Similarly, a holistic, dynamic understanding of thebiological sciences and how experience of cancer and of fertility shape individual experience and are materialised by this is necessary.

4. Conclusion

Through my practice, research and the combination of lived experience, feminist technoscience, queer theory, and creative practice I created ways of becoming more involved with how the medical-technological processes were shaping my subjectivity during cancer. It is fairly common for people with chronic illnesses, pain-related conditions, life-long health conditions, disabilities and experiences such as cancer to come to an embodied understanding of their conditions.⁹¹ The ways in which disease materialises through the body enables us to become experts in our own conditions.⁹² Despite this, healthcare systems function very much like black-boxed technologies from which patients can be alienated from their own treatment. The value judgments associated with the term ‘monster’ are also worth exploring: a ‘monster’ could be used to describe someone who has/intends to harm others. The monstrosity of this article embodies terror in the sense that it cannot be controlled by or serve the fascist natalist movements we see across the globe. The practices and experiences presented in this paper consider how material, human, and non-human elements come together through creative practice and frame our medical subjectivity; in turn this is applied to broader issues regarding to accessibility and discrimination in fertility treatment.

The messy alchemy of a body revealed through disease, through being unruly, rejecting on the one hand and being subjected to medicalised normalisation on the other all merged together in a techno-bio-social concoction. As a queer artistic practitioner I find my medicated body’s technologically enframed and altered body one that emancipates me from the script of procreation and biological parenthood, especially given my encounter with questions concerning my bodily autonomy. I found the queerness of my body’s survival and early menopause affirming. The menopause itself, which was not easy, was also a kind of portal into self-expression that surrendered to my body’s needs. When I talk about the body, I consider the emotional, mental, anatomical, physiological and biochemical to all be part of my body in a multiscalar conceptualisation of a ‘technocoporeal’ entity.⁹³ I am happy to be incapable of creating another human life, and for this I find myself the subject of pity and confusion. Simply asking patients their preference seems an easy way to manage and care for different positions and preferences. What I love about being menopausal is that I am categorically ‘useless’ in the eyes of the pro-natalist and biological essentialist culture of the capitalist, extractivist nuclear family. No use value can be extracted from my uterus which makes my existence one that challenges their reality. Given that we live ‘in an era where the US is curtailing reproductive and transgender rights having an open discussion about the technology without prejudice will be the bigger challenge’.⁹⁴ Mutational becoming in my work has always been present, but my medical experiences over the past few years have re-affirmed my interest in the phenomena of corporeality: the magic of self-organising biological materials of all organisms, the different textures of tissues relating to how these tissues work (or don’t), the miracle of a healing wound, and magnificence of an aging body that has lived through days, eras and experiences too expansive to comprehend. The unfathomability of the body in sickness and in health (with both states existing on a spectrum) became more inspiring through my experience of disease and recovery.

Competing interests

The author has no competing interests to declare.