Worn out: episode 9 Feeding Tubes

A feeding tube, also known as a G-tube, is a tube inserted into a person's stomach to provide nutrition. It helps my sister, Suki, survive as she is unable to eat enough on her own. My mom blends her food for the tube twice a week. The feeding tube creates a bond between my mom and Suki, and changes how people perceive us. It is a wearable that connects us to a different world. The tube needs to be changed once or twice a year. We need supplies like feeding bags, pumps, and syringes. The feeding tube creates a strong bond between my mom and Suki, and it also affects my life. People judge us when they see the tube, but they don't understand the connections it creates. We should not judge disabled bodies and instead include and accept them. The feeding tube is a part of our lives and we should be proud of it. What is a feeding tube? A feeding tube, another word for it is a G-tube, which is a gastrointestinal tube that is attached to a person's stomach and inserted straight into their stomach. My name is Anna and this is Worn Out. These are the things we wear and what they mean. This is track number nine, feeding tubes. Ultimately this isn't about my sister, it's about me, it's about my mom and what this feeding tube does to us and how the feeding tube changes our bodies and how other people read our bodies through our interaction with her feeding tube. However, it's important to note the actual function of a feeding tube and what it does to Suki, my sister, and how we feed into it in order to help her survive. So I've asked my mom a few questions about what she does to put into Suki's feeding tube, how she interacts with Suki's feeding tube on a daily basis, and what it means to her. So what would you say is the literal function of a feeding tube? Well, in our case, her function is to provide ultimate nutrition to her because she's unable to chew and swallow enough by mouth to get the adequate nutrition she needs. So it provides a direct access to her stomach and I can put the best nutrients in her to keep her strong, healthy, and alert. So how often or how long does it take you to blend Suki's food for the feeding tube? I have chosen not to give her formula or anything that's manufactured because of the nutritional content and instead I blend for her at least twice a week and it takes about an hour and a half to two hours each. At first glance, people don't think, oh, a feeding tube is considered an item of fashion. But it really is. According to Malcolm Barnard, in The Function of Fashion and Clothing, he says that there's so many different functions of clothing, whether it be camouflage, protection, modesty, or immodesty. Everything has a function. And in this case, a feeding tube has the function of survival. It helps my sister live and without it, she wouldn't be here. But a feeding tube has way more meaning than just a function. This verbal shifts the way that people see us. The function is solely for survival, but since it's connected to a disabled body, it creates a different meaning than just survival. It connects us with a different world that people aren't used to. It creates bonds between me and my sister, my mom and my sister, and changes the way that people look at us, that people perceive us. But we don't let any of that judgment, negativity, stop us from interacting with my sister. How often do you have to change out Suki's feeding tube? The actual button itself pretty much stays intact unless it is pulled out accidentally. But it's recommended that you just change it if there's an issue with the button. And that happens maybe once or twice a year. So on that note, what supplies other than the actual tube are needed to feed her? Well, we have to have a feeding bag to put her blended diet into. We have to have a feeding pump to pump the food into her stomach. And then we need some extensions and some syringes for flushing and administering medication and water. Suki's body depends on us to create a relationship with this wearable that is attached to her. There's so much work that goes into the feeding tube from our bodies. Our bodies have to give. Our bodies have to supply her to live. But this interaction with this wearable leads to a really serious connection. It's a bond that will never be broken between my sister and my mom. Would you say that the feeding tube has created a different kind of mother-daughter bond between you and Suki? Well, I would say that it's definitely different than my other daughters. And it definitely is a bond because every time she eats, I have to be with her, which is unlike feeding a typical child. I think it also creates a special bond with anybody that learns how to feed her because there's a special connection between the person that's administering the food and Suki because she understands that she's getting her nutrition from an outside source and whoever the human is giving it to her has to be an important role or play an important role in her life or else she would not survive without it. It's easy to see how much work my mom puts into it. But what's not clear at first sight is the bond that was created because of this wearable. When I was an infant, I relied on my mom to feed me. She made sure I ate when I needed to and I relied on her for survival. But the mother-daughter bond of survival kind of drifted away after I started to learn how to make my own food, realized when I was hungry. But my sister doesn't understand this. She knows when she's hungry, but she's unable to tell us. So she solely relies on my mom and that bond that was created at birth throughout her whole life. So it's so much stronger because of this feeding tube, because my mom and my sister rely on each other to survive. But an easy question to ask is, does this feeding tube make the body, quote-unquote, disabled? The answer to that question is not very clear. Some could say yes, some could say no. Abby Knobloch and Marie E. Mohler in The Bodies of Knowledge Embodied Rhetorics in Theory and Practice says, There is no such thing as the body, and said she continues, wherever we are referring to an individual's body, that is, as a woman's body, a Latina's body, the list goes on. So when we see a not-normal body, we automatically are like, a disabled body. But when you see me, a quote-unquote, normal body, interacting with this disabled body, does that make my body disabled as well? Because I am interacting with this wearable that makes my sister's body, quote-unquote, disabled, clearly my sister's body is disabled. She's nonverbal, she sits in a wheelchair sometimes, she's able to walk, but at first glance, you can tell something is wrong. But our bodies are also observed differently only when we're interacting with this one item. The feeding tube has so much power over survival, but also has so much power over my life, my mom's life, my sister, my dad's life, anyone who interacts with it. And like my mom said, there's such a special bond with whoever is interacting with Suki's feeding tube. There's so much love and power and care that goes into it. But yet we live in a world where people question and they wonder what's going on because it's not normal. Would you say that the feeding tube creates a certain stigma in public or affects you as a mother? Well, I definitely would say that giving her anything through her tube in a public place draws attention to herself and to me. Kids are curious and adults often look in awe as to what I'm doing. And then if she's at the pool or the beach and wearing like a tankini or bikini, then the button is exposed and people can see it. And that draws attention because not many people are familiar with feeding tubes or what they entail or what they're for. At times as a sister interacting with the feeding tube and I get scared and I see the tube exposed, especially when she's at the beach, I am embarrassed and I have to accept the reality that sometimes when I'm interacting with this not normal body, I feel as if I'm being judged too. There's so much judgment in the disabled world that when you're interacting with it one-on-one and outside people are watching, you feel as if you're a part of it. People are only scared out when their bodies are not the presumed norm or they come into view with sights of inquiry. Clearly when my sister's feeding tube is noticeable, when it's out, when I'm interacting with it, when my mom's interacting with it, it shifts our relationships with other people. It shifts the way they view us. They put us into a certain category. Therefore, Maureen Johnson, who is one of the authors of Embodying the Feminist Rhetoric, she says, we do not read people by just looking at them, but instead catch ourselves before we pass judgment and acknowledge our own biases. Therefore, you never know what someone's going through when you first read them. People are quick to judge when they see me interacting with my sister's feeding tube. They're quick to judge when they just see the feeding tube alone. But it's the bonds and connections that the feeding tube makes between people that's unnoticeable. People just see the thing, they see the wearable, and they judge the person off of that. They don't see the power that the wearable has, the connections that it makes, the people that it bonds. Johnson also says that you don't know what someone's really going through when you first read them. And that's exactly what's happening when someone looks at a feeding tube. They don't know what's happening, they just see the problem. Now that you understand the power of this wearable and how it affects my life, how it affects my mom's life, and how it affects my sister's life, I want to inspire you to reach out, to not judge a book by its cover, to not exclude the disabled body, to include the disabled body. It is the new norm. It's part of our life. It's part of the world. We can't sit here and judge just because it's unfamiliar to us. We have to accept it. We have to be proud. Be proud of who you are. Be proud of your family. Be proud of the dysfunction. Because not everyone gets to be looked at like they're normal, even if they're not. And like I said at the beginning, this isn't about my sister. It's about me in the feeding tube. It's about my mom in the feeding tube. And how we interact with it, and how although we're not wearing it on our actual bodies, it impacts our lives just as much as if we actually were wearing it. I am proud to say that this podcast is sponsored by the Suki Foundation, which is an organization set up to support girls with Rett Syndrome, like my sister Suki, and to help raise money for a cure. For more information, please visit www.sukifoundation.org. I'd also like to thank Seth Makes Sound and freesound.org for the audios and background music. I'd also like to give a huge thank you to my mom for showing us her perspective as a mother and her interaction with this wearable. Stay tuned for the next wearable item brought to you by Maddie, Episode 10, Tattoos. She's going to explore how this has changed over time and how it impacts her today and how it impacts the world around us. Stay tuned for the next wearable. Stay tuned for the next wearable. Stay tuned for the next wearable.