Hosted by Erica Jolene | Transcription HERE
Part Three of Telling the Atypical Truth: Disability Community-Building Through Podcasting. Reading from sections “Need for Connection” and “Our Stories Matter” - Erica shares validating data, confirming that she was not alone with her feelings of social isolation. Using current research and scholarly work, she describes common and contradicting societal expectations of parenting that impact caregivers to children with a rare or undiagnosed disease. Early episodes from Season One are referenced in this episode.
Research conducted in relation to this podcast, "Telling the Atypical Truth: Disability Community-Building Through Podcasting," can be found HERE.
Links related to this episode:
Keir, A., Bamat, N., Hennebry, B., King, B., Patel, R., Wright, C., Scrivens, A., ElKhateeb, O., Mitra, S., & Roland, D. (2021). Building a community of practice through social media using the hashtag #neoEBM. PLOS ONE, 16(5), 1-8.
Stearns, E. J. (Host). (2021c, March 16). Atypical introduction [Audio podcast episode]. In Atypical Truth.
Stearns, E. J. (Host). (2021h, June 22). Announcements (No. 11) [Audio podcast episode]. In Atypical Truth.
Stough, L. M., Sharp, A. N., Resch, J. A., Decker, C., & Wilker, N. (2015). Barriers to the long term recovery of individuals with disabilities following disaster. Disasters, 40(3), 387–410.
Sweet, K.S., LeBlanc, J. K., Stough, L. M., & Sweany, N. W. (2019). Community building and knowledge sharing by individuals with disabilities using social media. Journal of Computer Assisted Learning, 36(1), 1–11.
Tufekci, Z. (2018).Twitter and tear gas: The power and fragility of networked protest(Reprint ed.). Yale University Press.
Welcome to Atypical Truth. I am your host, Erica Jolene. I take seriously Walter Fischer’s contention that humans are storytelling beings. I created this podcast to amplify the stories of people in my community - the community of rare diseases, disabilities, and complex medical conditions.
Over the next few weeks, prior to the release of Season Two, I will be releasing some bonus episodes for you. From the top, I just want to say that these may not be everyone’s cup of tea. However, if you are a caregiver to, or an individual with a rare disease, disabilities, or complex medical conditions, you may find these episodes to be very comforting and informative - especially over the course of the next few episodes. I also feel that these episodes will be extremely relevant to any and all professionals who work with the community of people with disabilities - including my fellow disability-podcasting peers. Throughout these bonus episodes, I do make reference scholarly work and current research, I have provided links to these works and the thesis in the show notes.
Need for Connection
Our new lives as medical caregivers to our children distanced us from the lives we lived before. It distanced us from our social life, our careers, and our relationships. Tools we once used to cope through difficult times were no longer applicable in a life where the resolution to the perceived hardship—the death of our terminally ill children—is unimaginable. In addition to the medical skills and knowledge that we had to quickly acquire, we also had to learn adaptable self-care skills to help us to simply exist, survive, and eventually thrive in a reality that very few people could even imagine, including ourselves. These transitions and this forced growth resulted in feelings of immense loneliness. We no longer shared relatable experiences with our peers. Our lives were drastically different from those who got to experience parenthood without the medical caregiving component.
I craved connection and I yearned to meet other families whose lives resembled our own. The unfortunate reality is that our children’s conditions limit our ability to leave the house for anything beyond necessary medical appointments. With the inability to physically get out and meet people, there is the added limitation of residing in a rural area where no known events occurred which would have allowed me the opportunity to meet other caregivers like myself. Furthermore, other caregivers like myself also experienced their own set of limitations in being able to safely gather and socialize. While there was a deep need for connection with my caregiving peers, in-person, real-life friendships with other caregivers felt impossible. Here's an excerpt from an early episode in Season One:
To say that this experience has been isolating feels like an understatement. Through many years of conversations with our children’s therapists, I began to learn that I was not alone in experiencing feelings of isolation. Many other families felt the same way and longed to connect as much as I did. But there were some big obstacles that I faced, and I think that many other families like our own face, in finding and feeling connected to those other families. (Stearns, 2021c, 16:38)
In the 2019 article titled, “Community building and knowledge sharing by individuals with disabilities using social media," a number of researchers reviewed multiple studies that detail the social isolation experienced by people with disabilities, many of whom have few friendships outside their family members and paid caregivers. Disabled people are frequently faced with constant challenges and obstacles in their pursuit to establish, nurture and maintain social relationships with others. In the article titled, “Barriers to the long term recovery of individuals with disabilities following a disaster,” researchers examined how a lack of resources and the common additions for those with preexisting disabilities hinders the recovery process and a natural disaster. These two articles, they focused on how our society has largely de-prioritized accessibility, resulting in many challenges that the disabled community experiences, specifically social and physical barriers which make it difficult to organize and communicate with one another. These same barriers, they often exist for parents of disabled individuals. However, few studies have been conducted to focus on the social needs of the family members and the caregivers of people with disabilities. Here's another clip from an earlier episode in Season One.
Our circumstances are so rare. What are the odds of finding families like our own within our local rural community? How do the professionals in our lives connect us without violating HIPAA? How do we navigate meeting one another when our children are medically fragile, and there are virtually no public spaces that accommodate our children's means long enough to spend quality time getting to know one another? And how the hell do we get out and meet alone if one does not have the luxury of having the support of another person who is capable of caring for our children? And what about just not having enough time to devote to meeting new people and investing in new friendships, because you can barely find the time to take care of yourself. (Stearns, 2021c, 17:12)
It is pretty obvious now that with the revolution of the internet, modern technology, and social media, many people suddenly gained the ability to connect with others residing all over the world, and a 2020 article titled "#Mapping, a movement: Social media, feminist hashtags and movement building in the digital age," researchers store and Rodriguez studied the phenomenal powers of utilizing a hashtag for fueling social movements. Here they found that the combination of modern technology and social media, they offer unprecedented access to spaces and conversations where marginalized individuals who were often left out of these spaces and conversations, can now easily meet, connect, and organize with one another. These advancements in technology, which connect many people at a virtual level, they've provided a unique evolution in our concept of what defines friendship, intimate connection, and community. As described in a 2021 research article titled, "building a community of practice through social media using the hashtag Neo EBM," researchers detail how entire groups of people who share commonalities, concerns and passions can now connect and share information at quote/unquote, "a scale that crosses institutional and geographical boundaries faster than previously possible."
In a 2018 article published by the Yale University Press, Tufecki's, "Twitter and tear gas, the power and fragility of networked protest," they share how hashtags when used as search engines on popular social media sites such as Twitter and Facebook, they have revolutionized traditional means for organizing, outreach, advocacy, and prevention. In my own experience, utilizing hashtags related to the symptoms our children were experiencing, it was the most helpful resource we had in connecting us to Facebook groups of families whose experiences resembled our own. For example, the hashtag #MMPSI, which is the acronym for the type of rare seizure disorder that my children experience, it is exactly what led me to connect with the podcast guests and fellow caregiver Jenny Park. In our conversation together, in the episode titled "Love Needs No Words," Jenny shared how informative these groups have been. To the extent that medical providers have been known to suggest social media as a supportive resource.
I've learned so much through our Facebook support group, from you and other moms, other parents who are living this and just being able to see the faces of these kids. It's been such a resource for me, I mean, even Josie's doctors have said, "Well ask in your Facebook group about this medication or about this treatment," because we are lucky to have that wealth of knowledge. So I do I, I turn to our support group quite a bit. (Stearns, 2021g, 28:04)
In a study conducted to examine the patient and caregiver use of social media, several researchers discovered that social media is both a cost-effective and efficient means for varying interventions. When considering the ease of access to social media these same researchers concluded that social media is capable of effectively providing an online supportive community for those who may not have the ability to participate in support groups in-person due to physical and/or proximal limitations.
In a 2020 scoping review of social media use by patients and health care, researchers Gupta, Khan and Kumar found that while the most popular patient use of social media is the search for information pertaining to a diagnosis, social media also offers a unique platform for patients to receive emotional support. They noted that patients not only look to others for shared diagnoses to learn more about their personal experiences with the disease, but they also benefit from sharing their own stories and health experiences. They further explain and I quote, "social media allows for any time, anywhere access to and dissemination of information around the globe." Furthermore, they explained that the accessibility of social media makes for a useful tool for patients to alleviate feelings of isolation because it allows many people from all over the world who share similar diagnoses to experience social and emotional support from one another. They found that through the use of social media, patients express feelings of empowerment from receiving information and advice from their virtual community.
In the 2018 article titled, "reconstructing normality following the diagnosis of a childhood chronic disease: does rare make a difference. Researchers found that personal contact with caregivers was fundamental to parents of children with rare diseases. Not only were other caregivers understanding of the language and the nuances of medically complex lives, but they also shared resourceful life hacks to everyday problems, and provided emotional support when other caregivers expressed hardships during challenging times. They found that through the photos of their happy, thriving, and aging children, that helped reduce fear and uncertainty about the future of other children living with the same disease.
A survey respondent and listener of a typical truth explained and they quote, "When my grandmother was dying, it was very helpful to understand what she was going through by talking with another friend that had an amputation about what that entailed in their daily life. This is obviously different from the disabilities talked about on Atypical Truth, but knowing what to expect or be prepared for is empowering." End quote.
It was validating to learn that when faced with a life-changing prognosis, others find comfort in hearing from people who have a shared lived experience. Understanding that our shared experiences not only help caregivers, but also family members, and friends of the patient; it gives just a glimpse of the potential range of people this podcast will serve more than I had originally predicted.
Finding support through social media was undoubtedly the single most helpful resource I came to find as a caregiver to children with a rare disease. I thoroughly enjoy the connections I've made, the friendships that I've found, and the wealth of information that I suddenly had access to in the form of other caregivers sharing their experiences. It is important to know that finding the right groups, forming new friendships, reading through blogs and Facebook pages of other children living with disabilities and rare diseases; all of this searching took precious time. Rather than looking down at my child, my face was illuminated by the screen of my phone. Rather than doing paperwork, organizing, and, you know, tending to the peripheral needs of myself and my family during downtime while my children napped. Instead, my time was consumed by the words of others, which provided me insight into how to manage life as a caregiver. While this insight was critical and prompting the healing chapter of my journey as a parent and caregiver, there were drawbacks and limitations to searching for connections to others when scrolling through social media.
The filtered photos to enhance the beauty and the perfectly edited captions to describe an experience made the content shared on social media feel, I don't know superficial? Because it seemed like people were often only portraying the positive aspects of their lives. The unscripted, unedited, and unfiltered reality of one's life is really portrayed on social media leaving many to feel inadequate and insecure about their own lives. Take for me example, our house looked like a field hospital disguised as a home. It was messy. It still is messy and cluttered by all things medical. Meanwhile, the photos I saw on social media of other families, they were bright, white, organized, and pristine. These seemingly staged differences between their life and ours only made me feel further distanced from the very people I had wished to connect with.
I found social media to be severely lacking this sense of intimacy of the personal connection that one receives when being able to meet with others face to face. And due to the word count limit of many social media platforms, the content of a social media post is reduced to what can fit in the textbox. And let's talk about what's in that textbox. The context of the post is really dependent on how the reader receives and internalizes the information. Therefore the intention of the post, it can be lost on the audience without the person and the voice delivering it. I needed to hear the voice of other parental caregivers, I needed to audibly process the full humaneness of their experiences. As a busy caregiver, I needed the option to hear these stories at my convenience, and leisure. Here's an excerpt from an earlier episode in Season One:
I want to hear from parents like you, parents whose lives look similar to my own, those who are tired of applying the filters of positivity and perfection for the world because we're learning that if you want to accurately convey the reality of our lives, being both unimaginably hard and rewarding all at once, you do so by sharing your hard-earned unapologetic truths. (Stearns, 2021c, 22:24)
That same revolution in technology that made social media successful, it pertains to podcasts as well. Based on the popularity of podcasts, in addition to my own preference for podcasts as a means of therapeutic entertainment, and information, I suspect to the use of a podcast to be an effective means of reaching, connecting, and providing information to other caregivers. Nearly five years ago when I first sought out podcasts that related to my life, being both disabled and a caregiver to disabled children, there were none to be found. Nearly a year ago, I had managed to find only two other podcasts of parents to children with rare diseases. Today I know of several, but the thing is, it took me becoming a podcaster to find them.
When addressing why people listen to podcasts, the listener survey respondents cited "entertainment" and "information" as their primary reasons. When asked about their preference between listening to and reading about the personal experiences of individuals within the disability community, 80% of my listener respondents reported the preference of listening. A listener survey respondent and fellow caregiver explained that they preferred both options because they provided enjoyable opportunities to acquire new information and expand their compassion for others. They stated, "I personally get a lot from reading and hearing other people's stories because I learn about situations of which I may have had no prior understanding. And I can use this new knowledge to grow my compassion. It's like a catharsis for me as well."
This information is promising for the field of podcasts because it informs podcast content creators that there exists a desire, and a preference from the audience, for the experience of audible information processing. However, this information cannot be generalized to represent the wider population, as we need to acknowledge that preferences for information processing are unique to each individual. And that not all people, especially the Deaf community have the option nor the preference for processing information audibly. But this information is important, if not critical to podcast creators and all other media creators to ensure that no matter the media platform we choose, accessibility to that media should be a priority, not an afterthought.
Our Stories Matter
My journey into podcasting began many years ago, before parenthood when I was a devout Sunday listener of the NPR show, "This American Life." I loved how this show allowed me a glimpse into the lives of others through the stories told by the voices of people with a wide variety of backgrounds and life experiences, as they shared about their struggles, their achievements, and all the weirdness in between. When this show became available as a podcast, my world changed. I took a deep dive into the land of podcasts to the extent that I found myself looking forward to mundane tasks so that I had an excuse to pop in my headphones and get lost in someone else's story. This was especially the case while my children were frequently hospitalized. Here's an excerpt from an earlier episode in Season One:
I don't know what that says about me. But I'll never forget pumping in the lactation room while listening to the first episodes of my favorite murder. From true crime comedy by two ladies who felt like friends but who I never actually met in real life. To the unusual love stories by my voice idle Phoebe judge, podcasts became my hands free therapy, my Zen, my ability to take a mental break from the emotional toll I was feeling during this time in my life. (Stearns, 2021h, 2:07)
I had noticed that there were very few stories that reflected my own lived experience, specifically the experience of being a disabled person and a caregiver to children with disabilities. As I state this, I am still unable to locate any podcast platform that uses the word "disability" as a search term category. Nor is it an option amongst 91 different subcategories, which include subjects like alternative health, fitness, nutrition. I was frustrated by the health-centric and ableist nature of podcast categorization, which resulted in a lack of availability and access to disability and caregiver-themed podcasts, which of course, only mirrored the lack of representation we experience in all other aspects of life. Listening to podcasts was a convenient, efficient, and accessible form of free therapy. It was the ideal and preferred source of entertainment because it required very little in return. With my hands-free and available to still tend to my responsibilities around the home and to my children, when listening to a podcast I could put in my earbuds, set the show to play, and find myself engrossed for hours in the stories of others. But rarely did these stories reflect my own.
Driven by a combination of frustration with the lack of representation in the world of podcasts, and the desire to use this voice I was originally told I would never have, I was inspired to utilize the platform of a podcast. Understanding that I had a unique in multi-dimensional perspective of life as a disabled child, a medical professional, and a caregiver to disabled children. I felt that I can navigate and relate to a variety of topics with individuals whose lives were, in some way or another, impacted by disabilities and complex medical conditions. This context, it inspired the birth of Atypical Truth.
This concludes Part Three of the research bonus episodes. Next week, I will be sharing from the sections Participant Contributions to the Conversation, Free of Judgment and Layered Lives. As mentioned before, you can find a list of the references mentioned during this episode in the show notes.
If you can relate to this content, and you're interested in being a guest or hosting your own conversation, please don't hesitate to reach out to me. You can reach me through the website at www.atypicaltruth.org. You can also find Atypical Truth on Facebook and Instagram.
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