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).
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.