Recently in our 21st Century Trends in Writing Studies class we have began to discuss scholarship that navigates and explores the relationship between technologies (primarily “wearable” technologies) and rhetorical frameworks. Our class discussions left me thinking of my friend and how her daily life is so intrinsically linked with her daughter’s life-sustaining G-Tube (gastrostomy tube). Kidshealth.org defines G-Tubes as “a tube inserted through the abdomen that delivers nutrition directly to the stomach”. It has also left me considering how there are many people who are constantly working with wearable technologies that are often left with few easily accessible resources or opportunities.
As we were discussing Jordynn Jack’s “Leviathan and the Breast Pump: Toward an Embodied Rhetoric of Wearable’s” I saw a link between my friend’s own lived experience and frustrations as a G-tube caregiver and the frustrations shared by the pump users in Jack’s article. Our discussions of Molly Margaret Kessler’s “Wearing an Ostomy Pouch and Becoming an Ostomate: A Kairological Approach to Wearables” left me wanting to use similar strategies in order to bring attention to the lived experiences of wearers who depend on life-sustaining technologies that the general public often considers a taboo subject. Furthermore, I want to follow her example of facing the negative stigmas and misconceptions that many wearers
Hopefully, by complicating and articulating some of the challenges (lived, emotional, and embodied) that G-tube wearers and their caregivers face we can begin to develop more comprehensive and nuanced manners in which to facilitate further empowering discussions on the ways in which the life sustaining technologies G-tube users and their caregivers use are “embodied” and depend on material designs, performances of gender, and policy frameworks.
I have discovered that while some academic research has been done on the experiences of G-tube wearers the majority of it is inaccessible to the G-tube community (wearers and their caregivers.) The lack of easily digestible and accessible resources for G-Tube users and their families places additional mental and emotional burdens on them. Notably, the areas in which the most productive and accessible G-tube narratives are produced and are located is within the realms of social media sites like Facebook and Pinterest. However, the responsibility of creating and sharing relevant and useful content should not fall solely on their shoulders.
My primary objective for the post is to begin to address the gap between the often-inaccessible academic discourses related to the lived experiences of G-tube wearers and their families and the areas in which accessible and “real” conversations about these experiences are taking place within discourse communities. In other words I want to bridge the gap between the often-inaccessible academic discourses related to the lived experiences of G-tube wearers and their families and the areas in which accessible and “real” conversations about these experiences are taking place within these communities.
“Real” Stories and “Real” Embodied Experiences
In life there are moments in which we find ourselves and our loved ones faced with challenges that seem extraordinary, unfamiliar, and daunting. One such moment occurred a few years ago. One of my closest Army spouse friends shared with us that her daughter had been diagnosed with an extremely rare and challenging condition known as Prader-Willi syndrome (PWS). The Prader-Willi Syndrome Association (USA) defines Prader Willi Syndrome as:
“a complex genetic disorder affecting appetite, growth, metabolism, cognitive function and behavior. It is typically characterized by low muscle tone, short stature (when not treated with growth hormone), incomplete sexual development, cognitive disabilities, behavioral problems, and the hallmark characteristics – chronic feelings of insatiable hunger and a slowed metabolism that can lead to excessive eating and life-threatening obesity.”-pwsausa.org
Like so many other people I had never heard of PWS but could tell from my friend’s reaction to the news that it was something unfamiliar and unsettling. A quick Google search provided a conflicting assortment of discouraging and supportive content that explained the life-long condition and the labors that would be required to manage her daughter’s life with this syndrome.
Unfortunately my friend’s experience is not uncommon and points to a larger pattern in which many people who are already dealing with the emotional and physical burdens of caring for a health condition are additionally taxed with sorting through a seemingly hostile digital landscape comprised of inaccessible and clinical discourse.
It was not long before it was decided that our friend’s baby would need a G-Tube and that no other options were available. At this point two things seemed certain: the first was that her baby was going to have to live with the complications of this syndrome for the rest of her life and the second was that my friend was going to do everything in her power to ensure her baby received the best care possible.
Though my friend understood there would be challenges to overcome in the process of assisting her baby with the G-tube technologies she never anticipated that some of the biggest challenges would be defending both her daughter and herself from the preconceptions that people within and outside of the medical field have towards certain types of wearable technologies. While there were many people who genuinely wanted to learn more there were still many people (a surprising number of employees within the medical and insurance fields included) who showed a lack of empathy and often were downright judgmental towards their situation.
Perhaps some of the misunderstandings she encountered stems from the disparity in communication between those familiar with G-tubes and those who may not be familiar with them.
Representation and Accessibility: G-tube and Social Media Platforms
Though there are non-profit organizations that aim to help parents who have children with both Prader-Willi syndrome and those who need G-tubes there is a startling amount of information on the web that is problematic in that is does not provide an optimistic (or arguably a realistic) outlook for children who use these technologies or are living with this syndrome. Furthermore, the majority of scholarly studies focusing on PWS and G-tube user experiences are often rooted in social science and medical discourse and often is not easily accessible to family members who want to learn more about G-tube technologies.
Keller Allen in his “Managing Prader–Willi syndrome in families: An embodied exploration” mentions the exceptions to this trend and the need for further discussion and exploration of how families navigate the practices involved in assisting their loved ones who are impacted by PWS. Allen quickly establishes that most of the discourse surrounding G-Tubes users and their experiences is often problematically isolated from the very that people that need the information and representation the most. Allen identifies a clear “gap” in the discourse surrounding PWS and calls for an expansion of the parameters of the conversation on G-tube wearables from scientific and medical publications to a broader spectrum of disciplines. Unfortunately, after discussing how he plans to expand PWS experinces into the field of Social Sciences he then mentions his work is not meant to be “a guide” for family members and caregivers. Ultimately Allen does move his conversation about PWS and G-tube wearables into a new field of study but it is still not designed to be used by the people who need it the most and it is certainly not easily accessible to them.
In an ideal world G-tube users and their caregivers would be able to quickly locate and access comprehensive, useful, and easily digestible information regarding the experiences involved with wearing G-tubes. However, in reality many G-tube users and their caregivers (like my friend) in addition to dealing with the difficulties of managing and maintaining G-Tubes often face the additional challenge of locating trustworthy and useful content. As a Graduate student I have more open access to scholarly and groundbreaking articles and research publications regarding G-tubes than most G-tube wearers and their caregivers.
Before I started looking for information about G-tubes it would have been hard to convince me that social media platforms like Pinterest, and Facebook were the primary digital spaces in which G-tube users and their caregivers are crafting and sharing their own narratives of G-tube wearing experiences. G-tube caregivers and users are beginning to change the digital landscape of G-Tube narratives via social media platforms and blogs in order to provide more hopeful and realistic content about the lived experiences of G-tube wearers and their providers.
Blogs are one of the major digital sites in which G-tube narratives and experiences are being shared and distributed. For example Kathryn’s blog “Singing Through the Rain,” has numerous posts meant to help other G-tube users and caregivers navigate the everyday experinces involved with caring for a loved one who wears a G-tube. Her post “My Child has a G-tube: A Day in the Life,” provides a supportive and encouraging space in which new G-tube wearers and their caregivers can find useful content.
“Many parents of children on feeding tubes have experienced negativity, inappropriate comments, and poor behavior from family, friends, and even strangers. Please know our child doesn’t have a feeding tube because we are lazy or because the doctors didn’t know what they were doing. They have it because for them it is a need and more importantly a life-saving need.”- Kathryn @ https://singingthroughtherain.net/2017/02/child-g-tube.html
Facebook has also offered G-tube users a digital space in which G-tube users and their caregivers are able to share information, triumphs, struggles, tips, and medical materials with each other. Closed groups such as “G-Tube Keiki (G/J), (J), (N/G), and (N/J)” and “G-Tube Babies (G/J),(J),(N/G), and (N/J)” are two of the largest and most active online G-tube communities I have been following in my attempts to gain a better understanding of the needs and strengths of their community . For those who may have questions about how to use certain supplies or where to obtain them these groups are supportive communities that offer quick, reliable, and often creative feedback for veteran and new G-tube caregivers and users. These groups also do a good job of ensuring that members of their community are not constantly bombarded by individuals trying to sell G-tube specific products and as a whole cultivate a supportive community that represents the shared experiences of G-tube wearers and caregivers.
Of all the social media sites that I have looked at for sharing content about G-tube experiences Pinterest was the most surprising digital site I stumbled across during one of my late research nights. I understand that many people often think of Pinterest as site that is meant for stereotypically domestic things like collecting recipes, decorating and wedding planning. It is interesting to see how Pinterest is being used to share information like the aforementioned Facebook groups. The Pinterest posts are less dialogic than the ones on Facebook and are often more oriented towards promoting the sales and production of G-tube friendly products. This is likely due to the nature of Pinterest and how it is a site that is typically used for finding and creating domestic products. Many G-tube users have used Pinterst to share tips, tricks, motivational memes, and customizable G-tube accessories with each other. I was motivated to create my own board to help share G-tube content with other users and those who want to learn more. Please feel free to check it out @ https://www.pinterest.com/lmcall/g-tubes/
Hopefully this post was able to provide a small glimpse of the lived experiences of G-tube users and their care givers. Unfortunately, the aforementioned gap between researchers/medical providers and G-tube users and caregivers is too large to completely address in a single blog post. In the future I hope to continue to address this gap by conducting a series of semi-structured interviews with G-tube users and their caregivers and thus facilitate further empowering representations on the ways in which the life sustaining technologies G-tube users and their caregivers use are “embodied” and depend on material designs, performances of gender, and policy frameworks.
If you or anyone you know are looking for more resources on G-tube experiences or would like to work with me in creating more accurate representations of what it is like to be a G-tube wearer or caregiver please feel free to contact me.