Part One - Telling the Atypical Truth: Disability Community-Building Trough Podcasting

Hosted by Erica Jolene



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Moments like this are what keep me grounded and grateful!


The last few months have been so FULL! I have been busy tending to the soil of my soul. Behind the social media scenes, I’ve been adding nutrients for my creative growth, branching out into new exciting career opportunities, watering my heart by allowing myself to feel the full spectrum of emotions, and allowing myself to hibernate when the internal sun doesn’t feel like it is shinning. Of all the things I have done as of late, it’s these quiet, unseen, unspoken conscious changes in behavior that I am most proud of. It hasn’t been easy, there have been many growing pains, but I am feeling better than ever about what the future holds.


Growing up with disabilities and a complex medical condition, and now being a mother of two disabled children, my life experiences have long motivated me to pursue a career in the field of disability advocacy. I knew that I wanted to use my unique experiences in a way that would help others, but it has taken me a LONG time to figure how to do this and who to do it with. Then came, late one night last in June, an online research rabbit-hole led me to the most surprising twist of fate, all thanks to THIS podcast!


I am so elated to share that I have become the Southern Illinois representative for a nonprofit disability advocacy organization, The Arc of Illinois. I want to share more about this amazing career that I have the absolute honor of landing, but that would seriously take up an entire episode of its own. So I will save that for a later date - when I have official consent to do so. I will just say this, I have found my dream job and I am so fortunate that not only allows me to keep up with my podcast but truly celebrates the work I am doing! I work with the most amazing women, all moms of disabled children who have a passion for helping others and making changes at the policy and legislative level! They are wise sages who are generously passing on a wealth of knowledge to me, and I couldn’t be more grateful. I feel most honored to carry this new torch for our community.


Between an exciting new job and some unexpected medical events in our family, I took a bit of a longer break between seasons than I had intended. I am happy to share that starting tomorrow I will be back to deliver on my promise to share about the research this podcast allowed me to conduct. Expect to see the release of some bonus episodes over the next few weeks!


Please consider voting to help petition for Disability to be a category of its own. By clicking HERE, you will be helping to support shows like this to be more accessible and reachable to those within the disabled community who are searching them out.


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:

The Arc of Illinois

Institutional Review Board

SIU

Ellis, Kiesinger, & Tillmann-Healy

Kristin Langellier

Episode Transcription:


Erica 00:15

Welcome to Atypical Truth. I'm your host, Erica Jolene.


Erica 00:21

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 our release of Season Two, I will be sharing some bonus episodes with you.


Erica 00:40

And 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 and complex medical conditions; you may find these bonus episodes to be very comforting and informative. I also feel that these bonus episodes will be extremely relevant to any and all professionals who work with the community of people with disabilities, including my fellow podcasting peers.

Erica 01:18

So with that said, in these bonus episodes, I'll be sharing about my thesis research. And yes, this is available to read online, and I've provided a link to it in the show notes. However, keeping in mind the accessibility that I have found podcasts to offer. I felt it would be very helpful if I shared about this on the podcast, and I hope that it will help to reach a broader audience. I do make reference of other scholarly work and current research, and I have provided a link to those works in the show notes. They can also be found online with my thesis in the references section.

Erica 02:02

So here you have it, Part One of my thesis research, Telling the Atypical Truth: Disability Community-Building Through Podcasting.

Erica 02:22

I would like to introduce you to my world - the world of rare medical diagnoses, disabilities, and medical complexities. Those who identify with this community often experience unnecessary hardships because of outdated negative stigmas surrounding disability and chronic illness. Our stories matter, and I want to believe that they harness the power to challenge and transform these societal norms. In my research, I explore the use of this podcast to address the struggles faced by our community.

Erica 03:05

Throughout these episodes, you will be introduced to current research, and I will help to explain the important implications of the research for those in my community, but also for society as a whole. Using data collected from surveys, I share both respondents and my own opinions regarding the impact of this podcast and the possibility that podcasts hold for helping the disabled community feel connected to each other.

Erica 03:36

This thesis takes on an unconventional form - an Atypical form, if you will. My thesis tells the story of this podcast and my efforts to better understand how it might function as community-building. I set out to gauge the extent to which Atypical Truth would: provide listeners and guests with a sense of connection and community; resources for the phenomenon of complex medical conditions; and insight into the human experience. In addressing the importance of these themes: connection, community resources, and the lived human experience; I draw upon storytelling and surveys. I tell my own stories, and I put them in conversation with the stories of my podcast guests and survey respondents, and then I put that into a conversation with scholarship on disability as it involves community-building and the people impacted.

Erica 04:39

Storytelling as a research allows me to foreground the human component of disability. The conversation I have in my research moves from my storytelling on the Atypical Truth podcast, to my storytelling in real-time while writing this thesis, to the contributions to this story from the survey responses, and back to the stories told by guests on the podcasts. And like a conversation, these turns are not always neatly structured. Instead, they find their own flow, if you will.

Erica 05:17

Creating a Podcast: Atypical Truth is a project that I have spent the last four years imagining and the last year actualizing. As a person who grew up with disabilities, and now as the mother of two medically fragile children, I wanted to address the realities of our life in a way that will serve as a beneficial resource to families like our own, with a goal of helping them to feel connected and understood.

Erica 05:51

Through episodic storytelling and conversations, this podcast explores a variety of topics that relate to life as caregivers, disabled individuals, and/or individuals with rare diseases and complex medical conditions. Naturally woven into each conversation are a variety of relatable topics that impact our community on a daily basis. Topics such as anticipatory grief, navigating advocacy, social inequalities, healthcare challenges, financial struggles, inspiration porn, emotional and physical obstacles, accomplishments, and loss.

Erica 06:37

In the first season of Atypical Truth, I invited several guests to join me for recorded interactive interview. The guests range from personal caregivers like parents, legal guardians and family members, to medical professionals like nurses and doctors and other professionals like social workers, along with friends.

Erica 07:00

Communication scholars, Ellis, Kiesinger, and Tillmann-Healy, describe interactive interviewing as, [I quote] "an interpretive practice for getting an in-depth and intimate understanding of people's experiences with emotionally charged and sensitive topics" [end quote].

Erica 07:21

In their work titled Interactive Interviewing, talking about emotional experience, they explain the art that turns a conversational dance into an interactive interview, [and I quote] "Interactive interviewing reflects the way relationships develop in real life: as conversations where one person’s disclosures and self-probing invite another’s disclosures and self-probing; where an increasingly intimate and trusting context makes it possible to reveal more of ourselves and to probe deeper into another’s feelings and thoughts; where listening to and asking questions about another’s plight lead to greater understanding of one’s own; and where the examination of comparison of experiences offer[s] new insight into both lives." [End quote] (pg. 122)

Erica 08:21

Much like a conversational dance the back-and-forth sharing done in an interactive interview, it often takes a narrative form. The communication and journalism scholar Kristin Langellier, explained that personal narratives are the everyday stories we - tell from explaining the events of an extraordinary experience to sharing about the mundane details of an ordinary day; the personal narrative serves as a part of the performance and cultural expression of everyday life. Langellier argued that personal narratives not only give researchers the opportunity to listen on the margins of discourse, but they also offer a voice to those within our society, who have historically been silenced. Langellier champions that storytelling and personal narratives, they're forms of research that challenge the boundaries of traditional research by promising a revolution in innovation of theories, designs, in methods of analysis.

Erica 09:29

Podcasts, they offer the ability to blend these two things, both the interactive interviewing and personal narrative. Podcasts are a relatively new and innovative form of audio media that served as a platform to widely broadcast our conversations and share our stories. While every podcast differs in content and style, they're often presented in the form of episodic spoken word, featuring one or more reoccurring hosts who discuss various topics and subject matter with each other, and or with rotating guests. With an estimated 22 million listeners each week, podcasts offer an accessible platform to share stories, start conversations, create a social network, and basically cultivate a community of like-minded individuals. Podcasts are usually free to stream, they can be downloaded to save for later, they can be listened to anywhere on a mobile device, and at any time that is convenient to the listener.

Erica 10:37

Based on the popularity and the accessibility of podcasts, in addition to my own preference for podcasts as a means of therapeutic entertainment and information, I understood podcasts to be an effective and efficient means of reaching, connecting and providing information to other caregivers, and individuals impacted by disabilities.

Erica 11:02

My Approach: During this season, I collected both qualitative and quantitative data through two sets of surveys, one that was offered only to the guests on the podcast, and another that was publicly available to listeners of the podcast. Both of these surveys they examine the effectiveness of utilizing a podcast as a platform for caregivers, disabled individuals, and or individuals with complex medical conditions.

Erica 11:33

I think it's important to note here that I did work with the Institutional Review Board at SIU to craft the survey, participants solicitation, and consent forms - all of which, including my materials and data collection processes, they were approved by the IRB.

Erica 11:54

Throughout the thesis, I present the survey data in a conversational, storied form. Narrated together with my experience shared publicly on the podcast and privately through my everyday lived experiences. I contextualize our stories with current research in the fields of rare disease, disability, and complex medical conditions to explore the benefits of using podcasts as a platform for creating a sense of community and emotional support to counter the isolating experience of caring for medically complex children. My goal was to present a cohesive and nuanced story of how one type of resource - this podcast - might be of service to those within my community.

Erica 12:49

This concludes Part One of the research bonus episodes. Yes, I'm stopping right before we get to the juicy bits. You can think Shonda Rhimes for teaching me her ways.

Erica 13:03

Next week, I will be sharing excerpts from the sections "Atypical Motherhood" and "Rare Reality." As mentioned before, you can find a list of the references mentioned during this episode in the show notes.

Erica 13:21

The beautiful soundscape behind this podcast is titled "Rugla" performed by my favorite contemporary music collective, Amiina. The cover art for Atypical Truth was designed by Kendall Bell (@littlebell.co). Links for these artists can be found in the show notes.