What Are You Looking At? Ableist Abuse in Public Spaces
TW: Tube feeding, ableist abuse, eating, starvation
“What the f*ck is that on her face?”
I have a feeding tube. It’s one of the first things that sighted people notice when they look at me. My tube passes through my nose, down the back of my throat, through my oesophagus, down into my stomach and through into my jejunum, which is the upper part of my small intestine. The part of the tube that protrudes from my right nostril is secured to my cheek using pink tape and then tucked behind my ear.
I have my feeding tube because of a condition called gastroparesis. With gastroparesis, my stomach’s motility is impaired, and I don’t have the strong muscular contractions necessary to propel food from my stomach into my digestive tract. As a result, if I do eat food, I get debilitating pain as well as delayed vomiting. To ‘eat’, my tube is connected to my feed, which is then pumped into my jejunum. I normally run the feed overnight and remain disconnected from my feeding infrastructure during the day.
I thought that I didn’t care about the glances, double takes, stares, and nudges that I get targeting my tube, my bodily difference. I thought I didn’t care when one young woman proclaimed loudly to another, on a busy street, “What the f*ck is that on her face?” That I didn’t care when men walked past me, their head craned towards me, staring. That I didn’t care when the man in the shop tugged the end of my tube and said, “you shouldn’t be out”.
I thought that these encounters weren’t ‘sticking,’ that I was rising above them. But I’m not. I’m storing them all, one on top of another, a slow accumulation of violent ableist abuse.
I read scholarship by disabled authors for solidarity and to find my place in the world. I especially love the work of Alison Kafer and my copy of Feminist, Queer, Crip is well thumbed. I always return to page three which reads, ‘I am yearning for an elsewhere – and perhaps, an “elsewhen” – in which disability is understood otherwise: as political, as valuable, as integral.”
It’s difficult to put the feeling of reading this sentence into words. I suppose the closest I can come is that with each ableist encounter I feel like I am shrinking. But when I read this quote, and their book, I feel possibility and hope.
So in this piece I consider the abuse that I experience, but I also want to draw attention to the possibility that disabled bodies pose in the resistance of normativity and what this means for understandings of care and interdependence.
“I’d rather be dead than have a feeding tube!”
… they looked me square in the eyes when they said this. And I nodded and smiled whilst they explained to me why a life without oral sustenance and a reliance on a feeding tube is a life not worth living. I sometimes wonder why I responded this way, and then I realise I was afraid, because a man was standing in front of me telling me I was better off dead.
But I think this man was afraid too–afraid of me, afraid of my tube as a bodily disruption, and afraid of the care and interdependence that it implies.
I think of my feeding infrastructure as my non-human stomach. The feed that I am given comes pre-digested and so performs the same function as stomach acid and enzymes breaking down food in a human stomach. My pump and feeding tube pass digested feed into my intestines, performing the same function as muscles in a human stomach.
Along with Poppy Budworth in another piece of writing, we theorise how disabled bodies with medical interventions like feeding tubes, as well as ileostomies or colostomies, are more-than-leaky. This is because, through infrastructures, such as NJ tubes and ostomy bags, such bodies constantly subvert bodily boundaries. My feeding tube for example, constantly unmakes the boundaries of my body by connecting my exterior with my internal organs. Whilst there is feminist scholarship on the unmaking of bodily boundaries, we consider it to focus upon temporal unmakings – such as breastfeeding – rather than constant unmakings, as experienced by many disabled people.
I have a care-full relationship with the infrastructures (my non-human stomach) that unmake my bodily boundaries. I must charge my pump, order my feed, and make sure that my feed is not expired and stored correctly in a cool, dark place. I must keep my pump in good working condition, sending it to be maintained, and cleaning it occasionally. In exchange, my non-human stomach cares for me, providing me with all the nutrition I need to live my daily life.
I also have relationships of care with those around me that enable me to use my non-human stomach. This is particularly important to me as I have an upper limb impairment which means often, I cannot manage my feeding infrastructure independently. For example, when my NJ tube is too short, I need someone to connect and disconnect my tube from the pump as I cannot lift my hand to do so. My tube also needs to be flushed with 120 millilitres of water after every use. Often the tube will become blocked and needs to be unclogged by someone applying pressure with a water-filled syringe. On rare occasions, the connection between my feeding tube and the pump becomes so tight that I require someone to use two pairs of pliers to loosen and disconnect it. Most commonly it will be my husband who engages in these acts of care, but sometimes it is family members, friends, and medical professionals. On a recent work trip from London to Barcelona, my colleagues each carried two one-litre bottles of my feed as they were too heavy for me to manage. There is something very intimate about your colleagues transporting part of your stomach in their suitcase on a train. I think in the early days of my disability I would have resented such interdependency. But every day I am learning to value it more. Put beautifully by Mia Mingus, “Interdependency is both ‘you and I’ and ‘we.’ It is solidarity, in the best sense of the word. It is inscribing community on our skin over and over and over again.”
“I like your tape!”
I also have relationships of care with wider communities of disabled people – often online – that help me live well and to understand the politics of disablement. I actually didn’t know that I was disabled until I began Tweeting about my mobility impairment and chronic illness and began engaging with people who had resonating experiences. Contrary to popular belief, you are not necessarily informed by medical professionals that you are, or have become, disabled. I think this is because they don’t want to upset us or mark us as different. But in doing, so we are denied identity, community, and solidarity.
An interaction that stands out to me, which was in the early days of my having an NJ tube, was when another disabled person commented that they liked the tape that I use to secure my tube to my cheek. The tape I use – purchased off Etsy from someone who also has a feeding tube – is a dark pink colour with white daisies on. The pattern always makes me smile, as daisies remind me of my wedding. The interaction was so different to encounters I had with non-disabled people in the early days of having my feeding tube. I would often have to explain why last month I didn’t have a tube but now, and for the foreseeable, I did. I would be met with pity, sadness, embarrassment, consolations, and apologies.
But in this interaction online I was met with a compliment. They liked my tube tape. They didn’t see my tube as an object of pity. Because my tube is not an object of pity. It is a fantastic and vital piece of medical equipment that allows me to live. I have gone from quite literally starving, to having the energy to live a life that I love. I can no longer understand pity in relation to my tube, because, helped by online relationships of care within my disabled community, I know it to be a technology to be celebrated. It is quite literally helping me to live well and to strive towards the “elsewhen” that I want for myself and my community.
What the f*ck is on my face? It’s my feeding tube and I am living.
In subverting bodily boundaries with our more-than-leaky nature, bodies like mine actively resist disablist conceptualisations of normativity and independence. We care and we are cared for. We love and we are loved. We show the value of interdependence and vulnerability and an alternative, a possibility, an elsewhen. And this is what those enabled by dominant regimes of power and value are afraid of.
More-Than-Leaky-Bodies: Existence as Resistance by Dr. Harrie Larrington-Spencer and Poppy Budworth
Harrie Larrington-Spencer (she/her) is a Research Fellow in the Active Travel Academy at the University of Westminster in the UK. Harrie is a disabled person, uses an NJ tube for the majority of her nutrition, and is interested in the intersection of feminist theory and critical disability studies. To get in touch with Harrie, follow her on Twitter: @TricycleMayor, or email email@example.com.
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