I stand over the table in my kitchen, which has been momentarily transformed into a studio in the late-night quiet. A tub of warm water sits next to a stack of my medical records, which I’ve been mixing with discarded breastmilk in a small bucket at my feet; on the other side sits another tub for catching the water from my mould and deckle. I can hear my son’s lullabies in the background, mixed with a white noise machine and softly transmitted over the baby monitor at my side. He was born almost a year ago, and while a third of the roughly six-inch incision through which he entered this world has healed to a barely visible silvery grey, the rest remains an angry pink; I feel it twinge as I move around the table. The midwives, obstetricians, physical therapists, and general surgeons I have seen for the lingering abdominal pain agree: it has healed completely. But in the folds of my belly and in the woven, purple-pink marks from individual stitches, my skin has knit the memories of trauma.
I bend down to examine the slurry in the bucket at my feet. I hear several cracks and feel a familiar grating sensation, as though my joints lack both grease and insulation; the skin around my scar stretches and I feel a pinch in my abdomen. In these moments, my body speaks to me of collagen fibers frayed and fragile, of puncture wounds—hormone injections, surgical incisions, and baby bites—endured as it swelled and shrank and swelled again.
I reflect on the three years that brought me to this moment and the labels assigned to my body. I write on a medical paper: “my disabled body as infertile ground.” I sound out the components, “as - in - fertile - ground,” and write again: “My disabled body as fertile ground. My disabled body in fertile ground. My disabled body as—if it were—a fertile ground.” What makes something fertile ground?
I pick up the paper and several beneath it. I see hand-scrawled reminders to myself about medication schedules, billing statements from the fertility clinic’s financing office, surgical notes from an operation to remove uterine adhesions. A chart, spread over several pages, tracks the progress of each egg retrieved from my ovaries and individually fertilized. Over a week, technicians’ handwriting documents the rate of their cellular division, notes that taper off as zygotes are found to be unsatisfactory for freezing or transplantation. I take a breath and tear the papers in my hands. I let the scraps fall into the bucket at my feet. The sweet, earthy smell of warmed breastmilk, collected and saved from bottles my son rejected, wafts to my face as I blend the scraps into a pulp. I add more organics: garden soil, tomato seeds, fibers from the sweaters I knit in hospital waiting rooms. I mix with my bare hands, the motions reminiscent of preparing my soil mix to start seeds each winter.
I grab a handful of pulp and let it disperse in the warm water. The shreds of paper dance between my fingers as I move the fibers back and forth in the tub. Occasionally a legible phrase rises to the top: Discard. Freeze. Ovarian Stimulation. Ehlers-Danlos Syndrome. Evaluation. Transaction ID. Quality of Embryo. I submerge my mould and deckle in the tub; the slurry settles within the wooden frame as I raise it out of the water. Some of the words remain legible. Some tangle with the fibers and settle out of view.
In this article, I describe an arts-based, autoethnographic inquiry exploring my journey into disabled mothering. I began this work in the final months of my son’s first year, as he rejected my breasts in his first steps toward independence and as my own supports, offered to address the physical and emotional effects of a traumatic birth, began to wane. My creative inquiry reflects on a roughly three-year period, during which I underwent surgical treatments for infertility, became disabled, carried a high-risk pregnancy, and embarked on early motherhood while healing from a complicated emergency caesarean.
I utilize a/r/tography (Irwin, 2004/2024; LeBlanc & Irwin, 2019/2024; Springgay, 2008), an arts-based research method that combines artmaking and writing in living inquiry, and reflect through a creative practice of papermaking. A process that breaks existing paper materials down to their fibers and re-constitutes them into a new structure, papermaking allowed me to make visible the de- and re-territorialization (Delueze & Guattari, 1987) that occurred in my own body, as (in the most literal sense) synthetic hormones tore into the collagen fibers protecting my joints, already weakened by Ehlers-Danlos Syndrome, and (more figuratively) the fibers of my being changed as my independent physicality was re-constituted into a mothering body. Using critical autobiography (Walker, 2017), I put language to my experiences during this period and examine those narratives as evidence of how my positioning (Boveda & Annamma, 2023) shifted along the axes of disability, gender, race, and class as I became a disabled mother. I draw on Deleuzoguattarian philosophy (Deleuze & Guattari, 1987) to guide my reflexive practice and analyze my reflections—represented throughout this paper in selected narratives and images—through a theoretical framework that draws on revolutionary maternal theory (Gumbs et al., 2016) and disability critical race studies (DisCrit; Annamma et al., 2013, 2022) in order to pursue a deconstruction of normative motherhood ideology as a function of ableist white supremacy.
Motherhood studies scholar Andrea O’Reilly (2023) uses the term “normative motherhood” to encompass the concept and ideology of the ideal mother. She links the idea of normative motherhood to Adrienne Rich’s (1976) foundational work, which suggested two divergent understandings of motherhood: motherhood, the patriarchal institution which endeavors to control women’s reproductive capacities and domestic roles, and mothering, the practice which relates to a woman’s experiences with her body and children. Cultural, legal, and medical practices over the past two centuries have contributed to the construction of motherhood as a regulatory institution that endeavors to control mothering bodies (Aunos et al., 2022; Johnson & Quinlan, 2018, 2019; Petersen, 2023; Rock, 2007). Resistance to these ideologies demands a consciousness-raising approach that allows women to reject the social forces that position their bodies as faulty in the context of dominant discourses of the “good” or “legitimate” mother (Johnson & Quinlan, 2018; Springgay & Freedman, 2010). Such work makes personal experiences visible and posits mothering as a relational process that can destabilize dominant conceptions of motherhood and re-order power relations (Springgay, 2010; Springgay & Freedman, 2010). Alexis Pauline Gumbs (2016) furthers the lineage of mother-scholarship, resisting heteronormative framings of motherhood by suggesting a revolutionary motherhood praxis that queers motherhood, draws on Black Feminist Thought, and centers radical caregivers outside of their biological markers to posit mothering as a political and communal practice of care (Beneke et al., 2024).
As the field of maternal theory has evolved, the notion that motherhood equates with institutional ideology while mothering conjures experience and identity continues to assume a central place in scholarship (Gumbs et al., 2016; O’Reilly, 2020). In my arts-based inquiry, I utilize this notion of mothering to explore how, as a disabled woman seeking medical intervention to conceive my child and as a disabled mother navigating recovery and early parenthood, my actions both uphold and resist the image of the “ideal” mother. In this work, I expose fault lines along which visible disabled mothering can chip away at the oppressive function of normative motherhood.
Normative motherhood ideology is upheld through the legitimization of whiteness and ability as cornerstone features of the ideal mother—aspects that make it ripe for analysis through a Disability Critical Race Studies (DisCrit) lens. Drawing on both disability studies and critical race theory in order to urge an analysis that foregrounds the mutually constitutive nature of ableism and racism, DisCrit stands in the scholarly lineage of Black feminist thinkers like Anna Julia Cooper and more contemporary scholars like Nirmala Erevelles who urge a historical-materialist approach to disability studies and see disability as constructed through its relationship to transnational capitalism (Annamma et al., 2013, 2022; Erevelles, 2000, 2011). Though all seven tenets of DisCrit are important to this work, I explicitly draw on tenets five and six (Annamma et al., 2013). DisCrit urges scholars to look to legal and historical context to understand the material effects of race and disability labels. I use this tenet to explore how normative motherhood ideology has historically created oppressive definitions of “ability”—to conceive, to birth, to mother—that are rooted in the intersecting systems of ableism and racism as they move through present-day society. In naming whiteness and ability as forms of currency and systems of oppression, DisCrit exposes how bodyminds are valued (or not) based on their proximity to capitalist, racist, and heteronormative ideals of (re)production (Lewis, 2022). I use this tenet to explore my own positioning (Boveda & Annamma, 2023) in relation to the normative institution of motherhood.
The power of DisCrit as a theoretical framework can be seen in work across the humanities, which evidence the centrality of racism and ableism as co-constitutive forces across contexts (Annamma et al., 2022). Though there is limited scholarship utilizing DisCrit as an analytical tool to examine normative motherhood as a function of ableist white supremacy, integrating DisCrit with revolutionary maternal theory offers a new and important lens in mother-scholarship. For example, a DisCrit-revolutionary maternal theory lens could build on critiques of ostensibly race-neutral, neoliberal arguments of individual “choice” in motherhood, such as those offered by Toft (2020) by integrating explicit discussions of disability. A lens drawing on DisCrit and revolutionary maternal theory might narrate racialized histories of the eugenics movement (e.g. Dudley, 2012; Frederick, 2014) to posit disabled mothering as resistance. In a similar vein, such a lens can deepen criticisms of racial biases in maternal care (e.g. Edwards, 2022; Gunja et al., 2022) by exposing the disabling effects of racism in maternal-fetal medicine. These are only a few examples of how integrating the tenets of DisCrit and critiques of normative motherhood can expand existing scholarship and offer new analyses at the intersection of race, disability, and motherhood.
The emergent framework of DisCrit mothering (Stinson, 2024) posits mothering as a social practice led by BIPOC, queer, disabled, and marginalized mothers and caregivers acting with the support of feminists in more privileged social or racial positionings. As an analytical tool, DisCrit Mothering encourages researchers, particularly autoethnographers, to embrace radical specificity (Sotirin, 2010) in examining the social contexts of their research. In so challenging the positivist emphasis on the generalizability of scholarship, radically specific personal accounts of mothering can work in opposition to white-ability hegemony and deconstruct dominant images of motherhood and family (Stinson, 2024). In this way, DisCrit, particularly through its intersections with revolutionary mothering, can be both a theoretical framework and a lived practice, extending its influence beyond research and into personal and familial realms (Beneke et al., 2024). In this inquiry, I use DisCrit to more thoroughly examine the role that racism and ableism play in sustaining motherhood as a regulatory institution and to theorize the role that visible disabled mothering—including and beyond my own—can play in deconstructing normative motherhood ideology.
Arts-based research refers to methodological tools that draw on the creative arts to merge theory and practice in embodied inquiry (Leavy, 2020). Based in the recognition that artmaking has always been a means of re/visiting beliefs, assumptions, questions, and ideas (Rolling, 2018), arts-based research embraces a perspective that invites practitioners to embody the liminal space between their scholar-self and their artist-self (Irwin, 2013; Leavy, 2020). It is a relational and embodied practice in which the self, others, and environment—and the interstitial spaces between them—are all used to make meaning (Springgay, 2008). Many scholars suggest that arts-based research is more than a methodology or set of methods but rather represents a paradigm distinct from qualitative and quantitative research (McNiff, 2018; Leavy, 2020; Rolling, 2018). It traverses boundaries, living “in the rhizomatic practices of the liminal in-between” (Irwin, 2013, p. 199) and is an iterative process that draws on evolving understandings of data, using artmaking as a tool of inquiry to move between what Rolling (2018, p. 500) refers to as “making sense” (discourse) and “making visible” (methodology) in a never-ending process of theory-building.
In this study, I employ the specific method of a/r/tography, a “tangential thread” (Springgay et al., 2005, p. 899) of arts-based research that draws on poststructural philosophy, feminist theory, and hermeneutic phenomenology to suggest inquiry as a living, continual, and embodied process (Irwin & Springgay, 2008/2018; LeBlanc & Irwin, 2019/2024). A/r/tographic inquiry weaves creative making (“art”) and writing (“graphy”) to generate meaning, with art and text relying on each other (Irwin, 2004/2024; Irwin et al., 2006). The strokes in between the first three letters evoke the interconnected identities that drive inquiry in a/r/tography, that of the artist, the researcher, and the teacher/learner (Irwin et al., 2006), who are “creating and re-creating their lives… through a hermeneutic circle of interpretation and understanding” (Irwin, 2004/2024, p. 39). A/r/tography occupies a space in-between research and art-making, an attribute scholars note is a performance of Deleuze and Guattari’s (1987) rhizome (Irwin et al., 2006; Irwin & Springgay, 2008/2018; LeBlanc & Irwin, 2019/2024). A/r/tographers take interest in disruptions that challenge fundamental assumptions of stability, particularly in identity-based inquiry—an interest that evokes connections with the Deleuzoguattarian concepts of deterritorialization and becoming (Boulton et al., 2017; LeBlanc & Irwin, 2019/2024; Springgay & Freedman, 2010).
Arts-based research does not endeavor to arrive at conclusions or new theories, but rather to extend the line of inquiry and draw attention to potentiality (Boulton et al., 2017; Irwin et al., 2006), particularly when endeavoring toward social, cultural, and political change (LeBlanc & Irwin, 2019/2024). Thus, I do not employ a/r/tography to understand, formulate, or express my disability and/or mothering identity as fixed points at which I have arrived. Instead, I document my de- and re-constructed identities along various lines of flight (Deleuze & Guattari, 1987) and situate my becomings in their social context in order to invite other disabled mothers—especially other cisgendered white women—to challenge the ideology of normative motherhood as a function of ableist white supremacy.
One commonality across arts-based researchers is their use of the creative process to explore, inquire, reflect, and imagine. As a living, relational form of inquiry,
conceptualization of an a/r/tographic study is itself an artful task. On many occasions, the project is made clear only after, and not before, it has been implemented. The final form is designated to be open-ended as a means through which critical thinking and artistic inventions may continue to occur in the aftermath of inquiry. (LeBlanc & Irwin, 2019/2024, p. 274)
When I began, I did not know the full nature of my a/r/tographic inquiry; I did not know what form my final creation would take. I sought to make my experiences of disability and motherhood visible, and pursued an exploratory, translational process in which material evidence of my experiences transformed into artmaking materials as I began to relate to them in new, generative ways.
Visualizing and re-presenting my medical histories through artistic inquiry was a method of reclaiming and making new. Like the evolution of my identities, it was a process of becoming (Deleuze & Guattari, 1987), and I sought out crafting techniques that supported such a reimagining. I was drawn to organic materials whose natures allowed for transformation through relationality: threads that had become fabric that had become clothing; yarns that had been woven together; papers that had documented hope and fear, impossibility and potential; breastmilk that had been the last physical thread between my body and my son’s; soil and seeds we’d held together. Each told a story in isolation and, in relation, helped construct a constellation that documented my journey into disabled mothering.
A fibrous structure that can easily be broken down, paper lends itself well to de- and re-construction; it became both material and medium. I read and re-read my medical records, consent forms, procedure notes, financial receipts, and other written records of treatments, then tore each paper by hand into small pieces to form the basis of the paper pulp and slurry I would use. Paper scraps require a liquid to facilitate this reconstitution; I used expressed breastmilk, collected from bottles my son had discarded, and soaked the scraps, which I then processed into pulp. I left this thick enough that words and phrases were legible in the mix, so they might bleed into the final sheets. I added organic elements into the pulp, including soil from planting tomatoes with my son—one seed for each egg harvested during my retrieval procedure—and fibers from clothing I had made while waiting in doctors’ offices and hospital suites. In positing a feminist pedagogy of touch, Springgay (2008) writes,
Bodily fluids have often been expressed as aspects of the body that threaten the body’s sense of closure and containment and are thus abject. The abject cannot be completely expelled from the body, but is always already present, disturbing and endangering the limits of the body… [revealing] the corporeal vulnerability of the self and the pedagogical relation. (p. 63)
By utilizing these specific materials, I extend Springgay’s argument and suggest that not only breastmilk, but also handmade clothes, garden soil, and fertility treatments all evidence ways in which normative motherhood imagines the feminine body—her excretions, her domestic labors, her reproductive capacities—as a subject to be regulated and contained. Creating new from these artifacts of my journey was thus not only an artistic engagement with images of nurture and sustenance, but also a practice of challenging such images as instruments of control.
I repurposed wood from my son’s handmade nursery furniture to build a mould and deckle, which I used to make 16 sheets of handmade paper, representing each of my fertilized eggs that matured into an embryo deemed suitable for freezing (Figures 1 and 2). I then used the finished sheets for visual journaling: comparative sketches of a human embryo and tomato seed; a drawing of Rolling’s (2018) theory-building heuristic suggesting the shape of a uterus; notes documenting the eugenic process of ‘grading’ an embryo. I utilized each sheet as a line of flight (Deleuze & Guattari, 1987) along which I could explore different elements of my becomings.
Figure 1 Image Description: A yellow tub holds scraps of medical records into which breastmilk is poured from a large silver pot.
Figure 2 Image Description: A wooden mould and deckle rests on top of a large plastic tub. Paper pulp drains through it. A large tangle of fibers is visible over the paper, made of medical records and other recycled forms.
The completed pages are rhizomatically entangled, connecting to each other in unlimited and unforeseen ways that are further expanded in interaction with viewers. In exhibiting a/r/t, “the relationship between author/artist and audience takes on a pedagogical turn… [becoming] a powerful pedagogical source for relationship sharing, dialogue, and understanding” (Irwin, 2004/2024, p. 39). When I completed the 16 sheets, I invited a small group of friends and colleagues to join me to install the works in a publicly-accessible courtyard outside the building in which my department is housed. During the course of my pregnancy, students, staff, and faculty expressed concerns that the aging building’s disrepair was contributing to several serious illnesses among my colleagues, mentors, and friends; many of us continue to resist the institutional expectation that we hold classes and meetings in the space. Though the building is a known, central location in which someone in my department might easily display creative work, my choice to install my work outside, but in sight, of the building was an intentional decision to call attention to the intersections between capitalist expectations of productivity, disablement, and my experiences of pregnancy.
I gave few directions to my collaborator-participant-viewers, instead inviting them to place the sheets, as well as raw materials from my process, including draft sketches, research notes, planning measurements, and papermaking tools, based on connections they made between the objects. In this way, whatever finality may have been suggested by the public display of The Mother as an exhibit of “completed” artworks was shown to be its own enactment of living inquiry. Viewers were encouraged to treat the viewing as a relational process; the work was observed and discussed as we generated new questions and connections prompted by the installation. This was not about asking everyone to bring their own personal experiences with disability, pregnancy and/or mothering into conversation with mine—though all of us certainly did—but rather about creating a setting in which we could collectively deconstruct and reimagine the social, cultural, and political realities that uphold the ideology of normative motherhood through our relations to and with each other. The viewers included comrades with whom I’ve organized around issues of campus health and safety, advisors and collaborators, my husband/co-parent and friends who have held our son, and other disabled caregivers. Each person in attendance represented more than one of these relational identities. We viewed and discussed the work in community with each other, exhibiting the degree to which the viewing of arts-based research—by necessity an embodied, participatory experience (Lapum, 2018; Springgay & Freedman, 2010)—can also represent a powerful rejection of capitalist ideals in artmaking and education. Instead, such communal viewings cultivate the disability justice principle of interdependence (Berne, 2015; Sins Invalid, 2019), which tells us our liberation is built and our critical analyses of ableist systems are deepened when we reach for each other, attempting to meet each other’s needs in community rather than as isolated individuals.
Figure 3 Image Description: A sketch of collagen fiber assembly stages—from the molecule structure to the formation of collagen fibrils to a fully-made fiber—drawn on a roughly 8x10 sheet of handmade paper. Several items from the pulp were not fully blended and can be seen in the sheet, including colored pages and scraps of the artists’ genetic testing results.
“Labor will be the easy part,” my physical therapist tells me, her hands under my lower back as she works to realign my pelvic joints. “Most of my hypermobile patients deliver early, and they tend to be in active labor for less time. Remember, most women need their last weeks of pregnancy to loosen their pelvic joints, but yours are already wide open!”
She laughs, “Make sure you get to the hospital early.”
This is consistent with what the maternal fetal medicine specialist monitoring my high-risk pregnancy has shared: my pre-existing joint laxity, already exacerbated by the supplemental progesterone I received during fertility treatments and early pregnancy, will get worse as my body produces more progesterone in preparation for labor. I’m at risk for premature rupture of membranes, joint dislocations, and injuries from certain birthing positions, all slower to heal because of collagen disfunction.
“You’ll want to be able to move,” my therapist continues. “Don’t labor on your back or let your doctor hold your knees. Your joints can extend further than most women; if someone pushes you too hard, it’s likely your hips will pop. Listen to your body.”
I develop a fear that an epidural will inhibit communication with my body and result in injury. I tell my doctor I want a medication-free birth and as my pregnancy progresses, I become excited that my labor will challenge the simple division between disability and ability, my lived experiences of chronic pain having equipped me with the skills to navigate childbirth. Researching unmedicated births helps me begin to picture it: birth affirmations hanging in the room around me, dancing with my husband as I move through contractions, the weightlessness of my weakened joints in the warm bathtub, reaching past my belly to bring my baby to my chest, holding him as our shared cord still pulses with our bond, connected across every plane of being as I nurse him in the immediate golden-hour glow.
In this a/r/tographic representation, I disrupt simplified imaginings of my disabled and pregnant body and draw attention to the ways in which it was deterritorialized (Delueze & Guattari, 1987) throughout the three years this piece explores. During the course of my infertility treatments, when the supplemental progesterone exacerbated my joint instability and issues with wound healing, I was formally diagnosed with Ehlers-Danlos Syndrome (EDS), a connective disorder that causes the body’s collagen to become fragile (Ehlers-Danlos Support UK, n.d.), which my physical therapist and I had long suspected. Collagen has a fibrous structure; in “healthy” bodies collagen fibrils are tightly organized in helix formations which provide structure and stability, allowing the body—muscles, tendons, skin, cartilage, placenta—to move and stretch safely (Cleveland Clinic, 2022; The Nutrition Source, 2021). The embodied experiences of EDS patients are often marked by instability.
A/r/tographers are concerned with “disruption and displacement, or what Deleuze and Parnett (2007) and Delueze and Guattari (1987) refer to as ‘deterritorialization,’—fundamental changes to habitual patterns of behavior that cause movement away from secure and stable ways of living toward places of uncertainty and instability” (LeBlanc & Irwin, 2024, p. 273). I explore these moves away from stability by thinking with Deleuze and Guattari’s (1987) Body without Organs (BwO), an idea they take up from Antonin Artaud (1958) to resist bourgeois discourses of organized bodies performing appropriately in capitalist society (Fancy, 2018; Holland, 2013). Deleuze and Guattari (1987) distinguish between organs and the organism into which organs are organized, writing, of the organism’s humanist function, “In order to extract useful labor from the BwO, [the organism] imposes upon it forms, functions, bonds, dominant and hierarchized organizations… You will be organized, you will articulate your body—otherwise you’re just depraved” (p. 159, emphasis added). The bifurcation of “organized” and “depraved” echoes ableist, capitalist constructions of disability: nondisabled bodies organize themselves according to how they are expected to behave and (re)produce; disabled bodies, in their failings, are marked depraved.
This stratification of bodies according to disability and depravity is complicated in pregnancy. Popular media representations of fertility treatments foreground the experiences of white, cisgender, economically secure women who—aside from their experiences with infertility—are nondisabled (Johnson et al., 2019). Similarly, legal regulations and medical discourse frame pregnancy through the lens of disability to suggest pregnancy is a time of increased medical vulnerability (Johnson & Quinlan, 2018; 2019). These framings largely erase the specific experiences of disabled pregnant women and, in so doing, align the disabled and infertile mothering body with “depravity” in its existence so far outside of idealized norms. In his exploration of how hierarchy is assigned to disabled bodies, Fancy (2018) suggests the “organs” are “what need to be removed and by extension exceeded in order to explore ‘what the body can do’ outside of epistemologically restricting and socially constructed norms of embodiment” (p. 155), which implies depravity can be a site of potential for radical reimaginings. This suggests that actualizing the BwO is a practice of resistance to any social structure that forces conformity along normative modes of interaction, which allowed me to use the BwO in both creative inquiry and structural critique. In my a/r/tography, each handmade sheet explores various aspects of my own becomings, using my experiences of disabled mothering as embodied sites from which to challenge the stability of normative motherhood as an ideal that oppresses disabled and nondisabled mothers alike.
By nature, and increasing through my body’s interactions with progesterone during infertility treatments and pregnancy, my disability moved me toward instability—a physical reality that was echoed in the emotional experience of early motherhood. In becoming-mother, my body literally became without organs as the placenta, a temporary organ grown to facilitate exchange of nutrients and waste between myself and my son, was removed from my body. During pregnancy, as my own organs moved to make space for my growing son, my body housed and nourished his developing organs as though they were my own. In his birth, my body became without the human body and organs which, in pregnancy, I knew as part of myself. When my son arrived earthside, my placenta became an organ without a body and my son’s organs began to function independently, aligning themselves to bodily systems and functions distinct from mine. My body was de-territorialized in birthing, as the body I came to know in pregnancy was dis-organ-ized and re-organ-ized as a mothering body.
The sheets I created all embody this deterritorialization, most clearly in their structural similarities to the placenta. Grown from specific cells in the embryo, the placenta is independent from the growing baby, yet of them; likewise, it is of the mother yet independent from her. Certain cells, referred to as “chimeric,” are exchanged between mother and baby and remain in each others’ bodies throughout their lives. I sought to approximate this transference in the sheets of paper I made and the organic materials and bodily fluid from which I made them. Elements of the pulp are of me, of my son, of tomato—the pages embody the heterogeneous multiplicity of which Deleuze and Guattari (1987) write:
There is a fundamental convergence between science and myth, embryology and mythology, the biological egg and the psychic or cosmic egg: the egg always designates this intensive reality, which is not undifferentiated, but is where things and organs are distinguished solely by gradients, migrations, zones of proximity… The child, like the Dogon twin who takes a piece of the placenta with him, tears from the organic form of the Mother an intense and destratified matter… It is not the child ‘before’ the adult, or the mother ‘before’ the child: it is the strict contemporaneousness of the adult, of the adult and the child, their map of comparative densities and intensities, and all of the variations on that map… The Body without Organs is never yours or mine. (p. 164, emphasis added)
The physical structure of my handmade sheets embodies an “intense and destratified matter” that “is never yours or mine.” Fiber, as a representation of my disability, can be seen on and in the paper sheet (Figure 3). The drawing shows a detailed image of the molecular and fibrous structure of functioning collagen—how the braided molecules assemble themselves in fibrils, how these fibrils bind themselves together into the collagen fibers that, in my body, are frayed and irregular, weakened by EDS and joint hypermobility. The makeup of this sheet is more irregular than that of most others. It is easy to make out several pieces of medical record that did not fully dissolve into the pulp, suggesting that the fibers of the pulp itself did not fully bind together in the paper-making process.
The de- and re-construction represented in this paper is similarly captured in the accompanying narrative, in which dreaming of my son’s birth offered me opportunity to recast my dis-ability as ability in childbirth. This evidences the way in which disability is a constructed category of difference, as opposed to an immutable biological fact (Kafer, 2013), and the text indicates the degree to which my dreams of childbirth were shaped by normative motherhood imaginings of childbirth as natural, divine, and a moment for ecstatic connection with one’s heterosexual partner. Normative motherhood is constructed through dominant culture, which links women’s value to their reproductive capacity, assumes an innate capacity to nurture and desire to be a mother, and situates any failure to perform social expectations within the female body (Johnson & Quinlan, 2019; Johnson et al., 2019). Despite abundant scholarship that disproves dominant assumptions of (in)fertility and motherhood, this myth of the “faulty female body” persists through TV, film, and social media (Johnson et al., 2019), which foreground unassisted conception and low-intervention, vaginal birth as “natural” and what the female body was “built to do.” Both the visual artwork and accompanying autobiographical narrative evidence the ways I internalized such mythologies.
Further, a DisCrit analysis exposes how deeply I felt the oppressive property-status of my anticipated ability to birth and nurse without intervention. The images of childbirth that populated my social media feeds were all white women on birthing balls and in bathtubs, who blissfully birthed their babies and celebrated their immediate breastfeeding success; the discourse around these images was of women stepping into their natural power. As a white woman, I could see myself in these images. When a medical professional told me I could expect an easy birth, I believed that I would become one of these women. Whiteness and ability moved through my childbirth education in these ways, functioning as both property and oppressor—a form of status to which I aspired and also as a “carceral logic” (Miller, 2020; Rock, 2007) that shaped my beliefs about myself as a mother.
Figure 4 Image Description: A roughly 8x10 sheet of handmade paper. Several items from the pulp were not fully blended, which can be seen on the page, including pieces of a medical chart and colored papers. Black ink drawings show labeled cross-sections of abdominal layers and soil horizons.
Our hospital practices what they call a “family-centered Cesarean.” It’s supposed to feel less sterile and operative—less like a medical intervention and more like the “natural” births that populate my Instagram feed. The lights are dimmed and the medical staff speaks in hushed voices. We can choose music to be played through a small speaker; we request Abdullah Ibrahim’s Cape Town Revisited, the album that played in my husband’s car the afternoon of our first date, that played during dinner at our wedding reception, that we always return to when we need a moment of shared peace. I whisper a birth affirmation under my breath and try not to focus on what’s happening behind the blue curtain that shields my lower body from view. I hear our sons’ first cries.
“What a big boy!” someone exclaims. The NICU team laughs as they begin their exam; they never see babies this large. There is a rush to guess his weight—"He’s got to be nine pounds.” “No, I bet he cracks ten.” “Really? Look at him.”—and we hear an astonished “Ten pounds, Twelve ounces!” before our midwife brings over a swaddled, screaming baby and places his face by mine. My husband and I cry. I stroke my son’s cheek with my finger. Though we know his name, I still refer to him as I did when I was pregnant, “Hello, Baby. It’s okay. Mama is here.”
Time stops. It’s been moments or it’s been hours. It’s probably been only seconds.
The surgeon’s face appears over the curtain, and she says, “Your uterus is not contracting, so there’s some bleeding that won’t stop. We’re going to turn the lights on now so we can get it under control.”
My husband and son are ushered away from me. More doctors appear, pushing medicine into my IVs. The lights come on and more nurses rush to the area behind the blue curtain. Someone requests that blood be brought into the operating room. I tell the midwife I am nauseous. She holds my hand and lifts a bag to my chin, just in case. More medicines. More nausea. She asks me if my husband wants to go back to our room so he doesn’t have to watch. I know he would hate that.
When I was seven years old, I had my tonsils removed over winter break. A few days after the surgery, as my brother and I watched the Chanukah candles flickering in the window, I started to vomit blood. It wouldn’t stop and my father carried me to the car with a bucket, speeding to the emergency room. I remember the sound of my blood in the bucket as he drove. I remember the feeling of his arms as he carried me into the hospital, shouting for help. I remember the scissors that removed my blood-stained nightshirt—my favorite, pink with cats and dogs in a rain shower. I remember the surgical lights fading to anesthetic black as the emergency surgery began. I remember sitting at the kitchen table years later, my father weeping as he recalled refusing to leave the spot where he’d promised that he’d wait as they wheeled me to the operating room, where he was told as I was brought back to him that had he been ten minutes later there might not have been anything to do. These images come rushing back to me as I lie on the table, my hands intuitively reaching for my son on the other side of the room.
More nausea. More movement. More medicine. And suddenly, it is over.
In the above pair, I reflect on in/fertility and childbirth, theorizing the natural-unnatural binary as it played out in my pregnancy and delivery. Considering motherhood and disability simultaneously can destabilize the dominant assumptions underlying both constructions (Limaye, 2015; Lindgren, 2011)—a de-constructive potentiality that makes the philosophical offerings of Deleuze and Guattari (1987) particularly compelling theoretical tools with which to challenge the normative ideology of motherhood. Thinking with the rhizome (Deleuze & Guattari, 1987) allows me to break from binary thinking and explore the ways my experience of becoming-mother occurred in the interstitial spaces between natural and unnatural, abled and disabled, and fertile and infertile. In my a/r/tographic inquiry, I utilized the metaphor of my body as fertile ground to theorize my disabled body as a site of growth. I invited organic (“natural”) materials such as breastmilk, soil, and seeds to engage relationally with the records of inorganic (“unnatural”) medical tools like synthetic hormones, intracytoplasmic sperm injections, and surgeries. In Figure 4, I visualize the physical demands of a C-section and theorize it as a fertile site of growth by juxtaposing a medical sketch of the abdominal layers cut during a C-section with the layers of soil. Including the skin, there are seven layers a surgeon must cut to create a path through which the baby is brought earthside. Including the surface of the earth, seven layers of soil are considered in planting, the foundation of which is called parent material.
Despite my hopes to experience a low-intervention, vaginal birth, my son was born via emergency cesarean section nearly two days after I arrived at the hospital in labor. Dominant social images of normative motherhood celebrate “natural” childbirth in ways that invalidate the experiences of parents who deliver via C-section. Social media advances the unattainable image of ideal motherhood (Petersen, 2023); images of “strong mamas” on their birthing balls and dismissive euphemisms for C-sections like “belly birth” regulate women in childbirth and invalidate surgical birth as a path to motherhood. Even as my own childbirth education helped me to understand C-sections as a medical tool, I repeatedly heard messaging that C-sections are overutilized in American hospitals and that vaginal birth was what my body had been “built for.” I internalized such messaging and believed my body’s “failure to progress” in labor was a failure in myself. I equated vaginal birth with an achievement, my first opportunity to succeed as a mother, and when my disabled body—which I had convinced myself would be uniquely able to handle the physical demands of an unmedicated delivery—could not perform that expectation, I felt like less of a mother.
This exhibits the degree to which ideal motherhood ideology performs a regulatory function that is exacerbated and complicated at its intersections with disability, race, and class. The ideal mother embodies normative markers of femininity (Limaye, 2015) and is nondisabled, white, cisgendered, economically secure, and in a heterosexual marriage (Filax & Tyler, 2014; Johnson & Quinlan, 2019). She is selfless, always available to her children, naturally capable of providing care and nourishment, and fulfilled by her maternal role (Nassir, 2014). These discourses are reinforced in social media (Johnson et al., 2019; Petersen, 2023), inescapable images of celebrity parenting (Hallstein, 2020), and by medical professionals, policymakers, and childrearing “experts” (Rock, 2007). The ideal mother thus works alongside and with ableism (Aunos et al., 2022; Johnson & Quinlan, 2019; Malacrida, 2009), capitalism (Petersen, 2023), and white supremacy (Lewis & Craddock, 2020; Petersen, 2023; Rock, 2007), to discursively and materially oppress mothers who exist outside the white, middle-class norm (O’Reilly, 2023; Johnson & Quinlan, 2019). The regulatory function of normative motherhood ideology is upheld by neoliberal rhetorics of choice that suggest individual mothering practices are decided in a context divorced from social, cultural, political, and economic pressures (Borda, 2020), which serve to further discipline and control mothers. In these ways, the ideology of the “good” or “ideal” mother is constructed as an achievement granting social status and as an essential component of womanhood.
In privileging women who are unaffected by the systemic issues like affordable healthcare, guaranteed parental leave, and culturally proficient pre- and postnatal care, normative motherhood reproduces the social reality of ableist racial capitalism, legitimizing whiteness and ability as central aspects of the ideal mother through its ideological connections to oppressive systems that disproportionately impact disabled and nondisabled mothers of color (Johnson & Quinlan, 2019; Nassir, 2014; Petersen, 2023; Rock, 2007; Ross, 2014). In juxtaposition to the limitless capacities of the ideal mother, disabled women are seen as unfit (Limaye, 2015; Nassir, 2014; Rock, 2007) and as responsible for proving their capacity to mother (Walsh, 2011). These understandings are, in part, informed by the history of eugenics and forced sterilizations of disabled women, particularly poor women and women of color (Dudley, 2012; Frederick, 2014; Snyder & Mitchell, 2006), which engenders a social tension between disability and motherhood, especially in the context of reproductive technologies (Lewiecki-Wilson & Cellio, 2011). Such medical interventions, which many disabled women, including myself, require, play a role in upholding the idea that motherhood is the pinnacle of womanhood, yet they can be fraught with considerations about financial accessibility and eugenics-informed fears that disabled women are not “valid” or “capable” mothers (Mairs, 2002, cited in Walsh, 2011)—exposing the ways in which access to motherhood is always abled, raced, gendered, and classed.
DisCrit urges a consideration of sociohistorical context in understanding the co-constitutive nature of racism and ableism (Annamma et al., 2013), which shows how these forces circulate within normative motherhood as a socially-situated construction. The field of women’s health—and with it, issues related to infertility diagnosis and treatment—has always been raced and classed (Johnson & Quinlan, 2019). The earliest medical treatments for many gynecological issues are attributed to Dr. James Marion Sims, a white male doctor who rose to prominence for the experiments he conducted on enslaved Black women who—without anesthesia or opportunity to consent—were forced to endure surgical procedures (Dudley, 2012; Hess, 2021; Johnson & Quinlan). As obstetrics and gynecology gained status as a medical field and prenatal care became the work of doctors rather than nurses or midwives, the knowledge and cultural proficiency of community-based birth workers, many of whom were women of color, was de-legitimized—a historical shift that likely still influences racially disparate maternal outcomes (Johnson & Quinlan, 2019).
Today, women of color experience higher rates of infertility with lower access to diagnosis and treatment and the expense of IVF renders assistive reproductive technologies largely the purview of middle- to upper-class white women (Inhorn et al., 2012). Inhorn and colleagues’ (2012) work points to the stratification that occurs at the intersection of racism and infertility, where diagnosis and treatment is most accessible to wealthy white women, while poor women of color are de-valued both through racist myths that view their bodies as hyper-fertile and the economic barriers to assistive reproductive technologies. The relationship between disabled women and reproductive technologies is also fraught (Lewiecki-Wilson & Cellio, 2011), but the experiences of disabled women experiencing infertility are largely missing in both research and dominant narratives (Johnson & Quinlan, 2019), a fact that is exacerbated for disabled and infertile women of color.
In the Commonwealth of Virginia, where I gave birth, Black women are more than twice as likely to die in childbirth than white women and, of these deaths, 44% can be attributed to provider-related factors (Edwards, 2022). While approximately one-third of babies are delivered via C-section, this rate is higher for Black women than white women, both in elective and emergency situations, which suggests that Black patients’ relationships with their providers may partially explain the difference in rates (Huesh & Doctor, 2015). The difference may also be due to historic practices that have centered white bodies in medical training (Hess, 2021; Huesh & Doctor, 2015), which supports Edward’s (2022) assertion that culturally competent medical education is essential to addressing racial discrepancies in obstetric care.
In this landscape, I use the BwO to prompt explicit consideration of my positioning, of my body without organs. My white, cisgender, heterosexual female body, which most often presents as nondisabled, exists in a specific social context; an exploration of positioning rejects static assessments of identity and power, recognizing instead that experiences of privilege and oppression shift in context (Boveda & Annamma, 2023). During my son’s birth, I was given every opportunity to pursue the birth I wanted. When interventions became necessary, my providers explained them fully, answered my questions and those of my husband, and gave me ample opportunity to consent. Even when it became clear that my only safe option for delivery was surgery, I received a compassionate explanation of my situation and was given time alone to consider before agreeing to proceed. My whiteness functioned as a form of capital that kept my son and me safe. At the same time, the social narratives around ideal motherhood had conditioned me to assign a similar capital to the ability to successfully deliver vaginally, which resulted in feelings of failure when I could not. In these ways, this a/r/tographical pair displays the dual function—both capital and oppressive system—of whiteness and ability in motherhood.
Figure 5 Image Description: A roughly 8x10 sheet of handmade paper. Several items from the pulp were not fully blended and can be seen on the page, including pieces of a medical chart, colored papers, and thick yarn. Black ink drawings show an outline of the front and side view of a normal size ovary, as well as the side view of an ovary the size of softball. Markings show the measurements of these diagrams.
It's the evening of May 5th, 2022. My son is barely twenty-four hours old and he is crying to be fed. We’ve just arrived in the postpartum unit in the hospital where I gave birth, nearly four days after I arrived in labor and a day later than we’d expected to be transferred. I’ve only just had the Bakri balloon used to control my postpartum hemorrhage deflated enough for the surgeon and midwife to approve the transfer. My abdomen feels like it might explode from pressure and all my organs feel like they’re in the wrong place. I wince as I struggle to sit so my husband can help position our son at my breast. He struggles to latch, but we’re learning together. I start to cry. The combination of breastfeeding hormones and post-surgical laxatives generates deep, painful contractions that lead to no release. The son I carried for 41 weeks and four days is already here, the organ through which I nourished him has already been removed. While my son falls asleep on my chest, I twist in exhaustion and pain on the hospital bed, trying to get comfortable.
That night is harder than any point in labor. The pain renders me incapable of providing care, so my son is taken to the hospital’s nursery. My visions of tender, intimate postpartum bonding supported by my son’s constant presence bedside fade to darkness as I sob, watching our nurse wheel his bassinet away, passing the hospital-branded posters reminding me of the medical benefits to “rooming-in” as she leaves our room. I spend the night shuffling between the bed and the bathroom, leaning on my husband, breathing with every contraction as I’d practiced for the low-intervention birth that never occurred. Occasionally, we laugh that passing my first postpartum gas demands more of the birthing tools we’d practiced than I’d actually used in labor. More frequently, I wail in pain and sob that I can’t care for myself or for my child. My nurse enters with a consent form to give my son donor milk in the nursery; I hate myself as I put pen to paper. He should be with me. I should be lovingly lifting him into my arms, moving my body into whatever shape will provide him comfort, effortlessly nourishing him with the milk my body intuitively produces with each of his cries.
My son’s bassinet is wheeled back to my bedside in the morning; he is well-fed and happy in a hospital-branded bodysuit. The only baby away from his mother last night, he was doted upon by every nurse on the floor. This knowledge does nothing to soothe the feelings of failure and ache in my heart. My husband and I had each gotten a few hours of fitful sleep, so I nod in agreement that I made the right choice. Yet, as my son loses weight and struggles to breastfeed, I embark on a lonely, round-the-clock “triple feeding” plan to help him gain weight, convinced that his night of fast-flow hospital bottles filled with another mother’s milk made learning to nurse more difficult. I blame myself for not insisting he stay with me that night.
In the above a/r/tographical pair, I explore moments in which my actions upheld the ideology of normative motherhood, even as my body failed to perform its expectations. In the autobiographic narrative, I describe my inability to provide limitless, self-sacrificial care for my son and the feelings of incompetence that resulted from my need to rely on donated breastmilk to sustain him. In the accompanying image (Figure 5), I reflect on the physical changes to my reproductive system as I underwent fertility treatment. I compare the dimensions of a “normal” ovary—roughly the size of a walnut—with the dimensions of a softball, the size I was told each of my ovaries had swollen to during the hormonal stimulation before my egg retrieval. In this visual pair, I draw attention both to the way my body refused to comply with gendered, abled expectations of fertility and to my decision to seek out medical intervention that would assist me in achieving them.
Early a/r/tographers, drawing on curriculum theorist William F. Pinar’s conception of the “socially-engaged artist-intellectual” (Pinar, 2009, p. 52, cited in LeBlanc & Irwin, 2019/2024, p. 265), suggest that researchers should not only be engaged in the generation of academic knowledge, but also in understanding their self-formation within a social context. A/r/tographic inquiry is a life-writing and life-creating process that attends to memory, reflection, and representation (Springgay et al., 2005), underpinned by an ethical commitment that emphasizing reflexivity (Allen, 2020) and reciprocity (LeBlanc & Irwin, 2019/2024). This makes arts-based research particularly useful in identity work (Allen, 2019; 2020; Horwat, 2018; Springgay, 2008) and in critical-activist work that seeks to affect social and cultural change (Rolling, 2018). Like a/r/tographers, autoethnographic researchers practice reflexivity, engaging in critical introspection that prompts them to question their existing fixed practices (Hibbert et al., 2010).
In this inquiry, I utilize the text-based autoethnographic practice of critical autobiography, a method that Walker (2017) situates within narrative inquiry, integrating critical theory to draw attention to the workings of power at play in identity development. Miller (1998) attends to the social and political aspects of autobiography, positing that a queer approach to autobiography resists the impulse to tell a single or essentialized story of oneself. Instead, autobiography as a queer practice examines disjuncture to understand one’s multiple, intersecting identities as ever-evolving and unpredictable. In offering this conceptualization of autobiography to challenge normative ways of relating to ones’ self and others, Miller (2005) asks,
What possibilities might open if we were to make evident identity’s construction in order to create more space for and recognition of the various actions and ‘selves’ performed daily in a social landscape often blinded and hostile to variety? (p. 220, cited in Springgay & Freedman, 2010, p. 354, emphasis added)
Thus, critical autobiography can be used to deconstruct the dominant social norms and values that exist in a dialectical relationship with individual identity. In my inquiry, autobiographical narratives became the text (“graphy”) that was interwoven with my artmaking as I reflected on my identities as a disabled mother and deconstruct normative imaginings of the mothering body.
Malacrida’s (2009) interviews with disabled mothers highlight how women are implicated in upholding the ideology of normative motherhood; her subjects expressed feelings of empowerment as their pregnancy forced others to see them as “fully functioning adult women” (p. 114). Nassir (2014) also found that disabled mothers, even when additionally marginalized by their race, immigration status, and/or class, viewed motherhood as a site of power. While there is radical potential in the notion of disabled mothering as a site of power, it nevertheless bears consideration of what it means for disabled mothers, whose very existence is threatened by the forces of normative motherhood, to find power in achieving those normative ideals. For example, Kuttai (2011) writes about her breastfeeding journey as a disabled mother, “Breastfeeding makes me a valuable human being right now when I can do little else to take care of my baby” (p. 158). Breastfeeding is often a fraught part of the motherhood, viewed as something natural and desirable, an important thing for the ideal mother to be able to do (Petersen, 2023) and yet something that, in practice, is extraordinarily difficult for many women.
This suggests disabled mothers find themselves “caught between the demands of [their] culture and [their] interpretation of those demands” (Walsh, 2011, p. 82), navigating a liminal space between resisting normative motherhood and performing its expectations, and underpins the degree to which ableism creates a complicated context in which disabled women navigate conception, pregnancy, and mothering. Throughout history, medical perspectives have treated infertility, pregnancy, and the disabled bodies of mothers as abject, positioning female bodies as faulted on multiple, sometimes overlapping, fronts. At the same time, contemporary efforts to take more positive, less interventionist views of pregnancy and conception can erase the experiences of disabled women, who may require medical intervention to conceive and/or support a pregnancy (Johnson & Quinlan, 2019) and may inadvertently uphold a hierarchy in which the “good” pregnancy is the property of nondisabled women whose bodies perform the normative expectations of pregnancy without medical intervention or support.
Rock (2007) connects the pressures of performing motherhood with Michel Foucault’s (1979) conception of the “carceral continuum” to suggest the performance of motherhood as a form of self-policing that is “an impossible task… a mythic ideal [that] puts all mothers into a lose-lose situation, whereby the ways a mother comes to know how she should behave is repeated and imitated, manipulated and exalted in the media, setting a standard so high the only outcome can be a series of failures” (p. 21). This is supported by Miller’s (2020) suggesting that internalizing the myths of normative motherhood results in a practice of self-surveillance, by which mothers feel guilt when they can’t perform the “racist, classist, heteropatriarchal, unrealistic, and unsustainable standards of motherhood” (p. 463).
In the moments described in this a/r/tographical pair, my emotional responses and my decisions both exhibit and uphold the oppressive ideology of normative motherhood. In addition to exploring the feelings of failure I felt during my early struggles with breastfeeding, this pair reflects on my experiences with fertility treatments and how my decision to pursue them sustains the ideal mother image. The normative imaginings of women as capable of carrying, nurturing, and bearing children is held up by actions of women endeavoring to see themselves in that mirage. Ableist capitalist society places value on the ability of women to produce (participate in the economy) and also to reproduce (thereby creating other workers who can participate in the economy) and these values function to oppress bodies unable to perform in this way (Lewis, 2022; Wolters, 2013). My participation in these treatments shows that, even though my disability troubled the façade of myself as an ideal mother, my actions nevertheless sustained it as a regulatory construction.
At the same time, such moments exist in tension with my decision to make these experiences visible and thus to resist that assigned normativity. As a white, cisgendered women in a heterosexual marriage whose disability most often is not visible, my positioning grants me access to the white-ability capital at the foundation of ideal motherhood. However, in documenting and sharing my embodied experiences of pregnancy and breastfeeding, I choose to re-position myself against this assigned narrative and reclaim the “failures” at the heart of my mothering.
In suggesting that arts-based research constitutes a research paradigm distinct from qualitative and quantitative inquiry, Rolling (2018) writes:
ABR theoretical models are alternatively (1) analytic, which involves thinking in selected materials, whether in shaped matter, formulated techniques, or curated artifacts and collections; (2) synthetic, which involves thinking in selected languages, dialectically navigating shared symbolic and problem-solving systems; (3) critical-activist, which involves cross-examining selected contexts, exercising individual agency while interrogating prevailing circumstances, critiquing social actions and inaction, contesting ideologies, and resisting the repetition of unjust or ill-planned human events; or (4) improvisatory, which involves thinking reflexively, negotiating idiosyncratically across all the aforementioned ways of knowing and doing. (p. 503, emphasis in original)
My a/r/tographic process was improvisatory. I engaged in reflexive thought, cyclically making, interpreting, reflecting, and making artistic decisions. I had no idea, at the beginning of this journey, what I would create by the end. Making the sixteen pages and utilizing critical autobiography to write about my identity formation was a translational process that explored the relationships between my experiences, my chosen materials, and my social context in ways that were fluid, flexible, and responsive. I embraced a critical-activist agenda, exercising my individual agency in pursuing motherhood but nevertheless critiquing and resisting the social actions that uphold a normative ideology of fertility, ability, and motherhood. In my reflections, I situate my embodied experiences within my present social context in order to challenge how the image of the ideal mother functions to uphold ableist racial capitalism. I thought in selected languages, using the philosophical constructs presented by Deleuze and Guattari to facilitate introspective, reflexive analysis. Finally, I thought in selected materials, making paper from medical records, soil, fibers, and breastmilk in a process that reclaimed my embodied narrative and developed a rhizomatic structure through which I could envision my becomings.
A/r/tographic narratives of personal experience offer a challenge to dominant discourse, disrupting master narratives and exposing their malleability (Springgay, 2008). In a society that so often works to render disabled and mothering bodies invisible, visible disabled mothering can be a powerful act of resistance that challenges the image of ideal mother by drawing attention to different experiences (Frederick, 2014), adaptive practices (Lindgren, 2011), and the valuable perspectives disabled mothers provide to their children (Filax & Tyler, 2020). A growing body of writings by disabled mothers speak to the value of shared stories in developing a counter-portrait of motherhood and developing communities of support and care (Hayward, 2014; Lindgren, 2011; Tichy, 2014). Public performances against normative motherhood, such as the a/r/tographic work described here, are essential to (re)constructing a more radical imagining of the mother.
Allen, A. (2020). Using arts-based research to understand the sociocultural facets of having invisible disabilities in a normative society. International Journal of Education Through Art, 16(1), 101-114. https://doi.org/10.1386/eta_00019_1
Annamma, S. A., Connor, D., & Ferri, B. (2013). Dis/ability critical race studies (DisCrit): Theorizing at the intersections of race and dis/ability. Race Ethnicity and Education, 16(1), 1-31. https://doi.org/10.1080/13613324.2012.730511
Annamma, S. A., Ferri, B. A., & Connor, D. J. (2022). Introduction to the special issue - Imagining possible futures: Disability critical race theory as a lever for praxis in education. Teachers College Record, 124(7), 3-16. https://doi.org/10.1177/01614681221111427
Artaud, A. (1958). The theater and its double. (M. C. Richards, Trans.). Grove Press.
Aunos, M., Spencer, M., Pacheco, L., & Pituch, E. (2022). This changes everything: A critical reflection on the impact of internalized ableist constructs on becoming a disabled mother. Disability & Society. https://doi.org/10.1080/09687599.2022.2137392
Berne, P. (2015, June 10). Disability justice - A working draft. Sins Invalid. https://sinsinprocess.squarespace.com/blog/disability-justice-a-working-draft-by-patty-berne
Beneke, M. R., Cioé-Peña, M., & Migliarini, V. (2024). Solidarity on the screen and six feet apart? DisCrit mothering amid multiple social crises. International Journal of Qualitative Studies in Education. https://doi.org/10.1080/09518398.2024.2318314
Borda, J. L. (2020). The lasting impacts of “The Opt Out Revolution”: Disciplining working mothers. In L. O. Hallstein, A. O’Reilly, & M. V. Giles (Eds.). The Routledge companion to motherhood (pp. 343-352). Routledge. https://doi.org/10.4324/9781315167848-28
Boulton, A., Grauer, K., & Irwin, R. L. (2017). Becoming teacher: A/r/tographical inquiry and visualizing metaphor. The International Journal of Art & Design Education, 36(2), 200-214. https://doi.org/10.1111/jade.12080
Boveda, M. & Annamma, S. A. (2023). Beyond making a statement: An intersectional framing of the power and possibilities of positioning. Educational Researcher, 52(5), 306-314. https://doi.org/10.3102/0013189X231167149
Cleveland Clinic. (2022). Collagen. https://my.clevelandclinic.org/health/articles/23089-collagen
Deleuze, G. & Guattari, F. (1987). A thousand plateaus: Capitalism and schizophrenia. (B. Massumi, Trans.). University of Minnesota Press.
Dudley, R. (2012). Toward an understanding of the ‘medical plantation’ as a cultural location of disability. Disability Studies Quarterly, 32(4). https://doi.org/10.18061/dsq.v32i4.3248
Edwards, C. (2022, February 11). Why Virginia must do better for Black mothers and Black babies. Voices for Virginia’s Children. https://vakids.org/our-news/blog/why-virginia-must-do-better-for-black-mothers-and-black-babies
Ehlers-Danlos Support UK. (n.d.). Hypermobile EDS and hypermobility spectrum disorders. https://www.ehlers-danlos.org/what-is-eds/information-on-eds/hypermobile-eds-and-hypermobility-spectrum-disorders/
Erevelles, N. (2000). Educating unruly bodies: Critical pedagogy, disability studies, and the politics of schooling. Educational Theory, 50(1), 25-47. https://doi.org/10.1111/j.1741-5446.2000.00025.x
Erevelles, N. (2011). Disability and difference in global contexts. Palgrave MacMillan. https://doi.org/10.1057/9781137001184
Fancy, D. (2018). Affirmative freakery, freaky methodologies: Circus and its Bodies without Organs in disability circus. Performance Matters, 4(1-2), 151-163.
Filax, G. & Tyler, D. (2014). Introduction. In G. Filax & D. Tyler (Eds.). Disabled mothers: Stories and scholarship by and about mothers with disabilities (pp. 1-18). Demeter Press.
Filax, G. & Tyler, D. (2020). Disabled mothers. In L. O. Hallstein, A. O’Reilly, & M. V. Giles (Eds.). The Routledge companion to motherhood (pp. 77-88). Routledge. https://doi.org/10.4324/9781315167848-6
Foucault, M. (1979). Discipline and punish: The birth of prison. (A. Sheridan, Trans.). Pantheon Press.
Frederick, A. (2014). Mothering while disabled. Contexts, 13(4), 30-35. https://doi.org/10.1177/1536504214558214
Gumbs, A. P., Martens, C., Williams, M. (Eds.). (2016). Revolutionary mothering: Love on the front lines. Between the Lines.
Gunja, M. Z., Gumas, E. D., & Williams II, R. D. (2022, December 1). The U.S. maternal mortality crisis continues to worsen: An international comparison. The Commonwealth Fund Blog. https://www.commonwealthfund.org/blog/2022/us-maternal-mortality-crisis-continues-worsen-international-comparison
Hallstein, L. O. (2020). Mediated celebrity motherhood: Representing the norms, values, and practices promoted by and through celebrity moms. In L. O. Hallstein, A. O’Reilly, & M. V. Giles (Eds.). The Routledge companion to motherhood (pp. 133-146). Routledge. https://doi.org/10.4324/9781315167848-11
Hayward, K. (2014). It’s a miracle. In G. Filax & D. Tyler (Eds.). Disabled mothers: Stories and scholarship by and about mothers with disabilities (pp. 71-86). Demeter Press.
Hess, J. (2021, July 13). Why do Black women in the US have more c-sections that white women? openDemocracy. https://www.opendemocracy.net/en/why-do-black-women-us-have-more-c-sections-white-women/
Hibbert, P., Coupland, C. & MacIntosh, R. (2010). Reflexivity: Recursion and relationality in organizational research processes. Qualitative Research in Organizations and Management: An International Journal, 5(1), 47-62. https://doi.org/10.1108/17465641011042026
Holland, E. W. (2013). A reader’s guide: Deleuze and Guattari’s A Thousand Plateaus. Bloomsbury Academic. https://doi.org/10.5040/9781472547989
Horwat, J. (2018). Too subtle for words: Doing wordless narrative research. Art/Research International: A Transdisciplinary Journal, 3(2), 172-195. https://doi.org/10.18432/ari29378
Huesh, M. & Doctor, J. N. (2015). Factors associated with increased cesarean risk among African American women: Evidence from California, 2010. American Journal of Public Health, 105(5), 956-962. https://doi.org/10.2105/AJPH.2014.302381
Inhorn, M. C., Ceballo, R., & Nachtigall, R. (2012). Marginalized, invisible, and unwanted: American minority struggles with infertility and assisted conception. In L. Culley, N. Hudson, & F. van Rooij (Eds.). Marginalized reproduction: Ethnicity, infertility, and reproductive technologies, (pp. 181-197). Routledge.
Irwin, R. L. (2013). Becoming a/r/tography. Studies in Art Education, 54(3), 198-215. https://doi.org/10.1080/00393541.2013.11518894
Irwin, R. L. (2024). A/r/tography: A metonymic métissage. In R. L. Irwin, A. Lasczik, A. Sinner, & V. Triggs (Eds.). A/r/tography: Essential readings and conversations, (pp. 35-44). Intellect, Ltd. (Original work published in 2004 in R. L. Irwin & A. de Cosson (Eds.). A/r/tography: Rendering self through arts-based living inquiry (pp. 27-40). Pacific Educational Press.)
Irwin, R. L. & Springgay, S. (2018). A/r/tography as practice-based research. In M. R. Carter & V. Triggs (Eds.)s. Arts education and curriculum studies: The contributions of Rita L. Irwin (pp. 162-178). Routledge. (Original work published in 2008 in S. Springgay, R. L., Irwin, C. Leggo, & P. Gouzouasis (Eds.). Being with a/r/tography (pp. xiii–xxvii). Sense Publishers.) https://doi.org/10.4324/9781315467016-17
Irwin, R. L., Beer, R., Springgay, S., Grauer, K., Xiong, G., & Bickel, B. (2006). The rhizomatic relations of a/r/tography. Studies in Art Education, 48(1), 70-88. https://doi.org/10.1080/00393541.2006.11650500
Johnson, B. & Quinlan, M. M. (2018). Fictional film and television representations of (in)fertility diagnosis, treatment, and outcomes: Restitution narratives and the “faulted female body” myth. Health and New Media Research, 2(1), 3-34. https://doi.org/10.22720/HNMR.2017.2.1.003
Johnson, B. & Quinlan, M. M. (2019). You’re doing it wrong! Mothering, media, and medical expertise. Rutgers University Press. https://doi.org/10.36019/9780813593821
Johnson, B., Quinlan, M. M., & Pope, N. (2019). #ttc on Instagram: A multimodal discourse analysis of the treatment experience of patients pursuing in vitro fertilization. Qualitative Research in Medicine and Healthcare, 3(1), 1-14. https://doi.org/10.4081/qrmh.2019.7875
Kafer, A. (2013) Feminist, queer, crip. Indiana University Press. https://doi.org/10.2979/6841.0
Kuttai, H. (2011). Nurturing the nurturer: Reflections on an experience of breastfeeding, disability, and physical trauma. In C. Lewiecki-Wilson & J. Cellio (Eds.). Disability and mothering: Liminal spaces of embodied knowledge (pp. 156-163). Syracuse University Press.
Lapum, J. L. (2018). Installation art: The voyage never ends. In P. Leavy (Ed.) Handbook of arts-based research (pp. 377-395). Guilford Press.
Leavy, P. (2020). Method meets art: Arts-based research practice (3rd. ed.). Guilford Press.
LeBlanc, N. & Irwin, R. L. (2024) In R. L. Irwin, A. Lasczik, A. Sinner, & V. Triggs (Eds.). A/r/tography: Essential readings and conversations, (pp. 261-279). Intellect, Ltd. (Original work published in 2019 in N. George (Ed.). Oxford research encyclopedia of education (n.p.) Oxford University Press.)
Lewiecki-Wilson, C. & Cellio, J. (2011). Introduction: On liminality and cultural embodiment. In C. Lewiecki-Wilson & J. Cellio (Eds.). Disability and mothering: Liminal spaces of embodied knowledge (pp. 1-16). Syracuse University Press.
Lewis, M. L. & Craddock, K. T. (2020). Mothering while Black: Strengths and vulnerabilities in a sociopolitical racial context of structural inequality. In L. O. Hallstein, A. O’Reilly, & M. V. Giles (Eds.). The Routledge companion to motherhood (pp. 89-102). Routledge. https://doi.org/10.4324/9781315167848-7
Lewis, T. A. (2022, January 1). Working definition of ableism – January 2022 update. Talila A. Lewis. https://www.talilalewis.com/blog/working-definition-of-ableism-january-2022-update
Limaye, S. (2015). A disabled mother’s journey in raising her child. In A. Hans (Ed.). Disability, gender, and the trajectories of Power (pp. 121-132). Sage. https://doi.org/10.4135/9789354797316.n8
Lindgren, K. (2011). Reconceiving motherhood. In C. Lewiecki-Wilson & J. Cellio (Eds.). Disability and mothering: Liminal spaces of embodied knowledge (pp. 88-97). Syracuse University Press.
McNiff, S. (2018). Philosophical and practical foundations of artistic inquiry: Creating paradigms, methods, and presentations based in art. In P. Leavy (Ed.) Handbook of arts-based research (pp. 22-36). Guilford Press.
Malacrida, C. (2009). Performing motherhood in a disablist world: Dilemmas of motherhood, femininity, and disability. International Journal of Qualitative Studies in Education, 22(1), 99-117. https://doi.org/10.1080/09518390802581927
Miller, J. L. (1998). Autobiography as a queer curriculum practice. In W. F. Pinar (Ed.). Queer Theory in Education (pp. 402-411). Routledge.
Miller, M. H. (2020). The governance of mothers. In L. O. Hallstein, A. O’Reilly, & M. V. Giles (Eds.). The Routledge companion to motherhood (pp. 462-474). Routledge. https://doi.org/10.4324/9781315167848-38
Nassir, B. (2014). Motherhood experiences of racialized disabled women. In G. Filax & D. Tyler (Eds.). Disabled mothers: Stories and scholarship by and about mothers with disabilities (pp. 233-254). Demeter Press.
O’Reilly, A. (Ed.) (2023). Normative motherhood: Regulations, representations, and reclamations. Demeter Press. https://doi.org/10.2307/jj.1410589
O’Reilly, A. (2020). Maternal theory: Patriarchal motherhood and empowered mothering. In L. O. Hallstein, A. O’Reilly, & M. V. Giles (Eds.). The Routledge companion to motherhood (pp. 19-35). Routledge.
Petersen, S. (2023). Momfluenced: Inside the maddening, picture-perfect world of mommy influencer culture. Beacon Press.
Rich, A. (1976). Of woman born: Motherhood as experience and institution. W. W. Norton & Company.
Rock, L. (2007). The ‘good mother’ vs. the ‘other’ mother: The girl-mom. Journal of the Association for Research on Mothering, 9(1), 20-28.
Rolling, J. H. (2018). Arts-based research in education. In P. Leavy (Ed.) Handbook of arts-based research (pp. 493-510). Guilford Press.
Ross, L. R. (2014). Disabling mothers: Constructing a postpartum depression. In G. Filax & D. Tyler (Eds.). Disabled mothers: Stories and scholarship by and about mothers with disabilities (pp. 155-176). Demeter Press.
Sins Invalid. (2019). Skin, tooth, and bone: The basis of movement is our people (2nd ed.). Sins Invalid.
Snyder, S. L. & Mitchell, D. T. (Eds.). (2006). Cultural locations of disability. University of Chicago Press. https://doi.org/10.7208/chicago/9780226767307.001.0001
Sotirin, P. (2010). Autoethnographic mother-writing: Advocating radical specificity. Journal of Research Practice, 6(1), M9.
Springgay, S. (2008). Nurse-in: Breastfeeding and a/r/tographical research. In M. Cahmann & R. Siegesmund (Eds.). Arts-based research in education: Foundations for practice (pp. 137-140). Routledge.
Springgay, S. (2010). ‘The Lactation Station’ and a feminist pedagogy of touch. n.paradoxa, 26, 59-65.
Springgay, S. & Freedman, D. (2010). Breasted bodies and pedagogies of excess: Towards a materialist theory of becoming mother. In B. Schultz, J. Sandlin, & J. Burdick (Eds.). Public pedagogy; Education and learning beyond schooling (pp. 351-365). Routledge.
Springgay, S., Irwin, R. L., & Kind, S. W. (2005). A/r/tography as living inquiry through art and text. Qualitative Inquiry, 11(6), 897-912. https://doi.org/10.1177/1077800405280696
Stinson, C. (2024). DisCrit mothering as analytical tool. International Journal of Qualitative Studies in Education. https://doi.org/10.1080/09518398.2024.2318290
The Nutrition Source. (2021). Collagen. https://www.hsph.harvard.edu/nutritionsource/collagen/
Tichy, M. (2014). Embodying my passions: Becoming a radical feminist mother. In G. Filax & D. Tyler (Eds.). Disabled mothers: Stories and scholarship by and about mothers with disabilities (pp. 109-120). Demeter Press.
Toft, J. (2020). History matters: Racialized motherhoods and neoliberalism. Social Work, 65(3), 225-234. https://doi.org/10.1093/sw/swaa021
Walker, A. (2017). Critical autobiography as research. The Qualitative Report, 22(7), 1896-1908. https://doi.org/10.46743/2160-3715/2017.2804
Walsh, S. (2011). “What does it matter?”: A meditation of the social positioning and disability and motherhood. In C. Lewiecki-Wilson & J. Cellio (Eds.). Disability and mothering: Liminal spaces of embodied knowledge (pp. 81-87). Syracuse University Press.
Wolters, E. (2013, May 31) What the fuck is queer theory? Critical Theory. http://www.critical-theory.com/what-the-fuck-is-queer-theory/