More-than-leaky bodies: Existence as resistance

‘Leaky’ bodies

In the 1980s, feminists drew attention to the way the body was being Othered within scholarship. Attributed to a mind-body dualism, they observed that whilst the mind was associated with reason, autonomy and objectivity, the body was associated with passion and subjectivity and to be treated with suspicion. And whilst (white, non-disabled) men were able to transcend their bodies, marginalised Others (i.e, women, Black people, ethnic minorities, Disabled people, LGBTQ* communities) were not.

Whilst there was a ‘turn’ towards the body in geography and related disciplines in the 1990s, the body produced in this scholarship was one with “secure boundaries, bodies that did not leak or seep, bodies that were clean, mess- and matter free” (see Robyn Longhurst, p.4). Such boundaried bodies imply discipline; a capacity to control and contain one’s leaks. Longhurst instead draws attention to the insecure and leaky boundaries of the body through the ways that it “urinates, bleeds, vomits, farts, engulfs tampons, objects of sexual desire, ejaculates and gives birth” (p.23). Recognising the material and leaky nature of the body enables “different understandings of power, knowledge and social relationships between people and place” (Longhurst, p.135).

More-than-leaky bodies

Building on feminist conceptualisations of bodies as leaky, we draw attention to chronically ill and Disabled bodies where rather than ‘leaking’, their subversion of bodily boundaries can be constant. The leaks that Longhurst identifies above all have inconstant temporalities, where bodily boundaries are made/unmade at different times. We position, however, that some Disabled bodies have constant infrastructures and flows that unmake bodily boundaries. Whilst these infrastructures and flows are constant, they are also unpredictable and subject to moments of ‘bursting’. Throughout this blog we discuss these experiences in relation to tube feeding and ostomies.

Nasojejunal (NJ) feeding tube and non-human stomach

‘Nothing about us without us’ (see Charlton) is a fundamental principle within disability scholarship and practice. This approach foregrounds the voices of people who live out the very experiences and issues being investigated and challenged in research, politics, and wider public discussions. As such, it is important that feminist writing and research with marginalised people and communities centres the experiences of experts. What follows is a narrative account from the blog co-author (and disability activist/scholar), Harrie Larrington-Spencer, which carefully considers our argument for more-than-leaky bodies as resistant and interdependent through her experiences of living with an NJ tube:

I have a condition called gastroparesis, meaning paralysis of the stomach. To get the nutrition I need, I have a nasojejunal (NJ) feeding tube and am fed with pre-digested nutritional feed, which is pumped through my tube directly into my jejunum (upper part of my small intestine). My feeding infrastructure - pump, frame, and feed (Image 1) – make up my non-human stomach, performing the same functions as a human stomach: breaking down and digesting food and passing digested food into my intestines.

By connecting my non-human stomach with my internal organs, my NJ tube constantly unmakes the boundaries of my body. I have no capacity to ‘hide’ this unmaking, as my tube protrudes from my nose and is secured by tape to my face. Whilst Longhurst observes that inconstant unmakings -for example pregnancy or breastfeeding – can lead to withdrawal from public space, I am unable and unwilling to withdraw. I have a dog to walk, medical appointments to attend, a job to do.

Whilst the unmaking of my bodily boundaries by my NJ tube is constant, it is also subject to moments of ‘bursting’. If my NJ tube is not connected tightly enough to my feed, I get an explosion of artificial stomach contents (pre-digested feed) over myself. If I forget to close the cap on my NJ tube and recline or lay down, I get liquid flowing up from my intestines, covering my bed or sofa with a yellow-brown stain.

In addition to gastroparesis, I have an upper limb impairment. Because of this I am unable to independently manage my NJ tube and feeding infrastructure and I rely on care from my husband, as well as other family members, friends and sometimes colleagues. Care involves connecting and disconnecting my tube from my pump, as well as flushing and unblocking my tube on a regular basis. On a recent work trip my colleagues each carried two bottles of my feed as they were too heavy for me to manage. There is something very intimate about colleagues transporting a part of your body.

Image: My husband Çağlar uses a syringe filled with sterilised water to unblock my NJ tube, overseen by our dog Frida (photo, Harrie Larrington-Spencer).

Poppy’s research with young people living with an ostomy engages with similar conversations about bodily (un)making, interdependence, and care. People with an ileostomy or colostomy have had surgery to exteriorise part of their small or large intestine on their abdomen. The bowel on the exterior of the body is called an ostomy, also known as a stoma. A bag is stuck onto the stomach, over the stoma, with adhesive; this bag stores waste that is excreted from the stoma. Like an NJ tube, an ostomy is a long-term unmaking of bodily boundaries.

Poppy’s research reflected on the participants’ relationships with non-human infrastructures, such as ostomy bags, as well as their interdependent relationships with friends, family, and partners. For example Isla, who had her ileostomy formed due to Crohn’s Disease talked in a Zoom interview about her choice to identify as Disabled:

Here, Isla explains how her identity as a Disabled person is intimately interwoven with her dependence on non-human infrastructures. Isla mobilises her more-than-leaky body to establish herself as part of a Disabled community, and to explore her identity markers.

The constant making and unmaking of participants' bodily boundaries was felt intensely at times when vital non-human infrastructures failed. As with Harrie’s earlier accounts of untightened tubes and explosions, many of the young Ostomates shared similar experiences of bursts and leaks. For example, Rosie shared the following in a typed diary extract:

Rosie’s experiences demonstrate that living with a colostomy means that your body is constantly making and unmaking boundaries. People with a stoma have little control over their output, and on occasions an unexpectedly watery, acidic, or voluminous output can result in leakages. These experiences can be exhausting, particularly when people find themselves subject to the ablest gaze in public spaces. At the same time, the disruption of bodily boundaries in combination with the threat of bursts, leaks and explosions, means that people with tubes, bags, and pumps actively resist the idea of a ‘disciplined body’.

Existence as resistance

Throughout this piece we have highlighted some of the ways in which chronically ill and Disabled people’s bodies transgress boundaries, as well as how non-human bodily infrastructures, such as NJ tubes and ostomy bags, are more-than-leaky. Taking this further, we suggest that constantly unbounded bodies are actively resistant against ‘dis/ablest’ (see Dan Goodley) conceptualisations of normativity.

Crip theory is useful when thinking about ‘bodies as resistant’. Crip approaches bring together ideas from disability studies and activism, queer theory, and feminist work to critique Capitalisms’ ‘compulsory ablebodiedness’ (see Robert McRuer). Crip theory excites a re-imagination of what bodies, relationships, and society could, and should, look like, away from ‘ideals’, and exclusionary expectations. People, like Harrie, Isla, and Rosie, who rely on tubes, bags, pumps, and machines to live, actively go against normative (and ableist) understandings of the body and bodily containment. Re-imagining the body as unfixed and bodily surfaces as constantly made and unmade, is crip practice - it is political, it is disruptive, it is feminist.

Care-full and intimate futures

The reflections discussed in this blog can be mapped as hopes for care-full and intimate feminist futures, where more-than-leaky bodies demonstrate the complexity of people’s everyday lives. Whether that be care-receiving and giving relationships, or interdependent relationships with non-human infrastructures such as NJ tubes, ostomy bags, and pumps. In doing so, more-than-leaky bodies demonstrate an “else-when” (Kafer, 2013): where care is valued and meaningful.