Part Five - Telling the Atypical Truth: Disability Community-Building Through Podcasting

Hosted by Erica Jolene | Transcription HERE



 

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Wrapping up the research bonus episodes, I steer away from what outside research has to offer and present the information I obtained in my own examination of utilizing a podcast for disability community-building.


In this episode, I explain the intention behind asking the miracle question at the end of every episode. You will also get to hear from our listeners, as some of our audience were participants and might be curious to know how their contribution to this research was used. I have also included some important feedback for disability podcasters, some vulnerable information about myself to consider when criticizing someone’s efforts, and the ways in which this entire experience has transformed me. Getting a bit vulnerable, I share about challenges I have faced in the process of podcasting and my concerns about how those same challenges might present barriers to others. Finally, I share about the future of the podcast and the suggestions from listeners on what our community would like to hear more of.


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:

Solution-Focused Therapy

Miracle Question

The Arc of Illinois

 

Episode Transcription


Erica 00:15

Welcome to Atypical Truth. I'm your host, Erica Jolene. 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 last few weeks, I've been releasing bonus episodes of me basically reading from my thesis. This was certainly not an act of vanity or ego because while, I'm very proud of this project. I can't help but to think of all the ways I could have done it better. Still, I wanted this information to be available and accessible to all. So I figured the best way to do that is by sharing it on this podcast, especially when you consider that some of our listeners were participants, and might be curious to know how their contribution to this research was used.

Erica 01:15

You will be hearing all about that in today's episode, including some important feedback for disability podcasters, some vulnerable information about myself to consider when critiquing someone's efforts, and the ways in which this entire experience has helped me. Finally, at the end of today's episode, I will be sharing some exciting news. So buckle up friends, we are in the home stretch of this.

Dr. Aline Tanios 01:42

The Big Ask.

Erica 01:56

We all face obstacles and limitations, either personally or professionally. I strongly believe that the first step to changing or eliminating the obstacles we face is by sharing about them. This belief inspired me to ask our guests precisely what these limitations and obstacles looked like to them. Of course, it would be easy to focus on the myriad of problems in the medical system and we do talk about those limitations at great length. I sought to ask this question in a way that required the guests to think not of the burdens or the challenges, but instead, what life would look like if those problems were removed. In Solution-Focused Therapy, this technique is called the Miracle Question. Here's an example of what that sounds like. From my interview with Dr. Tanios in S`eason One, from the episode Complex Medical Care.

Erica 03:01

I'm gonna have you pretend for a moment that a miracle happened overnight.

Dr. Aline Tanios 03:07

Yep.

Erica 03:08

And suddenly, without any warning, you woke up and the healthcare system was perfect. It was flawless. Nobody's told you this. What is the first thing that you would notice? That would indicate that this was real and not a dream?

Dr. Aline Tanios 03:26

Yep. Yep. I'll tell you. Since I work primarily in a hospital setting, I'll tell you that the first thing would be seeing patients and their family being prioritized in action, not just on papers or in the saying. Number two is to feel that the health care professionals caring for these patients, who should be their priority, are well-supported by the system at every level, and not pulled in million directions. So they can focus on their mission because they are in that field for a reason. And last would be let the people who handle the business aspect or the policy aspect look at these two groups of people - patients, families, healthcare professionals - look at them from all these angles and say, "How can we help them so everybody can thrive. Therefore, the community will thrive, the whole system will thrive." But when you are like loading patients and families with tasks that can be handled by others in a timely manner efficiently, thoroughly, then as simple as like making a phone call for an insurance company, making a phone call for the therapy service, and you name it, as well as If you're loading the healthcare professionals with a million other tasks, you can't give you 100% of yourself to one thing when you're already, like, spread out too thin. But this is a dream, is that right? But listen, we keep dreaming... (laughter from both)

Erica 05:17

Exactly, exactly. In order to know what goals to aim for. We need to hear more about them.

Erica 05:25

Oh, absolutely.

Erica 05:26

And this is a part of that question is putting it out there. How can we make this dream a reality?

Dr. Aline Tanios 05:32

Yeah, and, you know, there's that saying that, if you don't ask for it, the answer will always be "No." So might as well ask for it.

Erica 05:42

It also shed some light for us on the obstacles that you guys face in being able to provide that kind of care that we expect walking in.

Dr. Aline Tanios 05:55

Oh yeah...

Erica 05:56

So it's a very helpful insight, thank you.

Dr. Aline Tanios 05:59

Yeah, oh, absolutely.

Erica 06:10

I love ending every episode with this "miracle question," or some variation of it, depending who the guest is. I never know what to expect. And I've never been disappointed. And you know what? You, our audience, also expressed appreciation for this part of the show as well. One listener stated it best when they wrote, "while it is necessary to point out the problems that need fixing, it is helpful to imagine what the world looks like on the other side of those problems. It provides hope to the situation. And it gives people reason to work towards those goals." End quote. How each guest responded to the miracle question if varied from one professional to the next. And that variation, that anticipation of learning about their perception of how things in life could be better, it provides society with that image of how things should be so that we are more educated and critical when we notice or experience the opposite of that.

Erica 07:14

When compiling the responses from professionals, it sheds light on a common theme. They're here to help. They want to fix the problems that stand in their way of being able to help in every capacity. But these problems, they exist at a systemic level. They're far too large for any one person to fix. These are the conversations we need to be having more of.

Erica 07:48

Participant Contributions to the Conversation.

Erica 07:54

If you're just now joining us, it may be important to note here that this podcast started as my thesis research project. In the early spring and summer of 2021, I collected survey responses from two groups of participants, both the guests on the show and the audience. And they had a lot to say...

Erica 08:15

These responses, they proved to be wholly informative and letting me know whether podcasts seem to be a helpful resource and whether or not this podcast specifically served as a valuable resource. When I asked in the survey, if the podcast helped to provide the listeners with a sense of personal connection to people with disabilities and caregivers, it was so freaking exciting to see that the participating audience members all answered YES. As one listener and fellow caregiver, simply but powerfully stated, the most beneficial thing they learned was that they were not alone and being a mother to a child with medically complex needs. This answer resonated deeply with me. Not only could I relate to understanding what it feels like to know that we are not alone in these experiences, it was equally powerful to know that was the feeling others were left with when listening to a typical truth.

Erica 09:22

Another listener and fellow caregiver explained that hearing the experiences within our community, even if they are not exactly the same experiences, it helps to relieve the intense isolation that is often felt. This response was so comforting and validating. It specifically addressed one of my concerns regarding how beneficial the podcast would be to others. If the disease, disability or medical complexities did not perfectly mirror the diagnosis of the listener or their loved ones.

Erica 09:58

When I inquired about this podcast providing a sense of community and support, I was super relieved to learn that all participants felt that, YES, this was effective and providing just that - community and support. One listener and fellow caregiver wrote that they felt a deep sense of connection and community with the guests on the show, despite not knowing them or having met them before. This response was incredibly helpful because I wanted to be sure that people felt invited to connect with our guests who are at the end of the day, just people - living and working and getting by like the rest of us.

Erica 10:43

In creating the podcast, I had intended for the content not only to provide a sense of community and support for people who identify with the community of individuals impacted by disabilities, but I also wanted it to serve as a helpful resource for our society at large, providing non-disabled people an understanding of our lives as people with disabilities and/or caregivers. One survey response was extremely impactful when they stated that while our realities are in no way similar to one another's, this show provided them a deeper understanding of what others go through. This response indicated that regardless of our experiences being so very different, the mere acquisition of the information regarding these different experiences was considered hopeful.

Erica 11:38

Another listener responded with the following statement, which spoke strongly to the resourceful implications of this podcast. They stated, and I quote, "Hearing stories of other parents and families helps me to feel less alone as the parent of a medically complex child. And it further informs me as a nurse with insight into the struggles and things that are important to patients and families navigating the medical system." End quote. This response is critical, because it acknowledges that caregivers exist in a variety of roles and identities beyond their experience of being a caregiver. It is important to recognize that our lives are not mutually exclusive to one role. And now what one caregiver experiences, may be drastically different from a fellow caregiver’s experience. It further speaks to how informative and helpful it is to learn more about the differing experiences so that knowledge can be applied to other facets of their lives, like our careers, our advocacy, and our parenting.

Erica 12:48

When asked if the podcast helped to provide a new or more profound understanding of the lived human experience, all listener survey respondents answered YES. A fellow caregiver expressed at best when stating that they gained insight into the heavy emotional roads that caregivers feel, and they felt support IN being an advocate to their child. Another listener shared that the most beneficial aspect was gaining the sense of connection, and knowing that other people are dealing with similar circumstances and experiences. I really appreciated these responses. And I took comfort in knowing that our audience felt a sense of connection and support IN our efforts of building the podcast community.

Erica 13:36

Understanding that humans are storytelling beings -as I say at the top of the show. I know that we have a tendency to learn from the stories told by others. So I asked our audience and the guests if they had ever personally benefited from learning about the experiences of someone within my community, and how that affected them. One listener who identified as a person with disabilities, explained that they learned more about the experiences of children with disabilities and complex medical conditions. They stated that this knowledge helped them to prepare and advocate for their own children, as they have a 50% chance of inheriting a rare disease and disabilities. They further explained that it was helpful to learn that you can find a balance between loving your child for exactly who they are, while also finding the day to challenges to be difficult, and that there are ways to talk about that without being ableist.

Erica 14:37

As a disabled person myself, I understand that the experiences of disabled people vary greatly. And that being a parent with a disability does not mean that by default, you know how to navigate raising a child with disabilities, or rare disease, or complex medical conditions. This was a hard lesson for me to learn. I naively assumed that I would be fairly comfortable raising children who had complex medical conditions. I was familiar with the equipment. I was familiar with the hospital scene. But it is a totally different ballgame when it is your own child. In so many ways this has strengthened me. But it has also completely terrified me.

Erica 15:22

Parents who grew up with disabilities may be able to relate to and understand the challenges a child with disabilities may face while growing up. But it does not automatically mean that you know their exact experience, nor how to best advocate for them. And understanding that everyone's disabilities vary, being a parent with disabilities doesn't automatically mean that you understand the disabilities of your children, because they may not be the same at all, which is exactly my case. These are things that we caregivers have to learn as we go. We're just out here winging it like the rest of you. And understanding this through experiencing it myself, it has given me a whole new understanding of the struggles my own parents faced as they navigated my life doing the very best they could as my caregivers.

Erica 16:15

So moving on... When asked to indicate how the audience received the experience of this podcast, it was encouraging to see that the listeners indicated a wide range of reactions. They primarily noted that the content shared was a completely new perspective, it was informative, and it was helpful. It was especially comforting to know that the listener respondents felt that the content on Atypical Truth was not offensive, harmful, or useless.

Erica 16:49

It is important to note that one personal caregiver felt the content of the podcast reflected their own experience, provided a new perspective was informative, helpful, and triggering all at once. This indicates that while the podcast may serve as a helpful resource, it also may bring about memories and feelings that are difficult to revisit for some individuals. And this is something to remain mindful of. As not every person with disabilities or caregiver is standing in the same place in their journey. Some may be experiencing medical trauma in real time as they listen to your story. And the details we provide might help them to feel an immense amount of comfort, but they also run the chance of instigating additional anxiety. This was something I had real concerns for throughout the production of Season One, especially when it came to the second episode I released titled Rebuilding Trust, because, you know, I went there. I shared all the details. Details that even to this very day still invoke feelings of anger and anxiety.

Erica 18:05

This listeners response informed me that in future seasons, the most responsible thing to do would be to provide our listeners a disclaimer regarding the content they are about to hear, especially if that content runs the risk of being graphic or inducing anxiety in others.

Erica 18:25

When compiling all the survey responses that were received, I noticed an overarching theme for the community of caregivers, disabled individuals, or individuals with a rare, or complex medical condition. And that theme is that people want and appreciate a glimpse into our everyday lives. Our peers with disabilities and fellow caregivers benefit from knowing that they are not alone. Friends and family and want to learn more about the challenges we face. And our non-disabled peers, they want to know how to become stronger allies so that they can advocate with us. And with that, I felt that I had done the job I had set out to do.

Erica 19:23

Personal Reflection

Erica 19:27

Utilizing a podcast as a platform to have and to share these conversations, it provided me with a wealth of skills, personal growth, and emotional healing that I had not fully anticipated. And it must be said, I admit that I severely underestimated the time and expenses required to produce, host, and engineer a podcast. Yep, I did that.

Erica 19:55

At first, each episode took an entire week to complete but eventually, it only required an average of three full workdays to produce an episode from start to finish. What does that look like you ask? Well, let me tell you.

Erica 20:12

Starting with the interview that usually lasts an hour to an hour and a half, I then begin the longest process of all, which is the editing. I first edit down the initial interview over the course of several sweeps, and by that I mean I take out unnecessary verbal clutter, tangents that we tend to go off on, and any silly stuff that is bound to take place during our conversations. Finally, I adjust the sound so that the volumes are more pleasant for our ears. This part is technically called "Audio Engineering" but I feel like a complete fraud calling it that when I still feel like I'm just winging it.

Erica 20:54

Next is the process of transcribing it, which requires me to carefully listen to the episode once again. I like to give myself a day or more between editing and transcribing so that I get a small break from listening to the same content over and over again. And I remember a fellow podcaster once saying that the podcast they listened to the most was their own -a and I finally understand what they meant by that.

Erica 21:22

After transcribing, there is the work of constructing all the social media promotional material. From designing the graphics to whipping out a new description and captioning for each episode. It's a lot of work. The day before the episode is ready to launch, I give it all one last look-over and then schedule it to automatically post on all socials and the website.

Erica 21:48

So I just want to take a short sidestep from all the thesis talk and get a little vulnerable with you for a moment.

Dr. Aline Tanios 21:57

This work of transcribing and constructing social media posts might sound simple enough, and it is for many people. However, it is not an easy task for everyone, especially for a person with dyslexia, or other learning disabilities. In fact, it is the most painstaking part of the process for me. It never fails, that I can read something 10 times over and it looks perfectly fine. Only to read it the 11th time and find that I missed a word entirely, made an elementary grammatical error, or used a word or even just a figure of speech completely out of context. My brain made perfect sense of it the first ten times, it filled in the gaps it read the words that weren't there, and it made sense of any scrambled sentence; because my brain is kind of clever like that.

Erica 22:55

However, I am sure you can imagine how mortifying it is to see it's so clearly wrong on that eleventh pass. Or even worse, to not see it at all, and to publish it with errors. I consider this part of the process the most anxiety-inducing part, especially in a climate where I've witnessed my own peers publicly humiliate and chastise others for their mistakes in spelling or grammatical errors on social media posts.



Erica 23:25

Learning Disabilities carry such a heavy and negative stigma around them that many of us who share in the struggle of things like dyslexia, we often don't share about our struggles with it, for fear of that negative stigma being cast on us. In some circumstances, there are very real social consequences that we may face when opening up about a learning disability. In a society that all too often devalues a person based on what they cannot do, rather than focus on what they can do, the consequences of sharing about our limitations can impact everything from our careers, to the respect we garner amongst our peers and our colleagues. It makes people feel fearful to be open about their cognitive limitations. And I include myself as a member of that group because this is the first time I've ever really publicly shared about it.

Erica 24:22

But the reality is, this has been a significant part of my own journey, which has really held me back. Not the learning disability itself, no. It was a lifetime of hiding this limitation. To the extent that I never asked for accommodations when I needed them. I've had to work ten times harder than my peers to learn and retain certain information, especially if it's straight out of a textbook. I was forced to come to terms with these limitations as I was completing this long-winded thesis, in tandem with creating the podcast and staying on top of other coarse work. In hindsight, it is no wonder that I needed a long break from the cognitive workout that I was feeling so very exhausted by.

Erica 25:11

The point of me sharing about this part of my podcasting hustle is that I had to make unexpected investments to help me catch and avoid the mistakes I tend to make. By investing in an editing service, I was able to reduce one layer of anxiety that I had not anticipated to find in the world of podcasting. But not everyone has the privilege of being able to make that investment. And in a way that makes these social media spaces and platforms somewhat intimidating, if not inaccessible to people who, like me, fear being publicly outed or shamed for a mistake, a simple human error that happens to everyone, but perhaps more often for some. And that has been my soapbox moment for the day.

Erica 26:07

Okay, so back to my official personal reflection from the thesis. Speaking of investments, I definitely underestimated the cost of producing a podcast. This has been a project that is self-funded, with the one exception of my good fortune of having been awarded the Margaret Messer student research grant through the Honors Council of the Illinois region, which allowed me to purchase some higher quality recording gear. There was the initial investment of equipment and software that I had anticipated, but I had underestimated the amount of time and money that it would take to learn audio engineering, provide transcriptions for each episode, maintain a website, and how to actively promote the show across multiple social media platforms. The time and the financial investments, they are not regrets. For I have learned so many new skills throughout this endeavor and I was happy to make the investment because I knew that I would continue to maintain the podcast long after my research was complete.

Erica 27:12

Throughout this experience, I found that this podcast allowed for many new professional relationships to develop and be maintained. I noticed that my voice, my opinions, and my personal experiences were met with respect and appreciation both personally and professionally. Family members reached out to tell me that they felt I had found my calling. Parental caregivers who I had never interacted with before, began contacting and communicating with me, specifically wanting to know more about my perspective as a child growing up with a tracheotomy because they wanted to better understand what it was like for their children who are growing up with one now. Physicians who I had previously only had brief and very patient-focused conversations with, they were now asking me about the podcast and sharing about their own unique personal experiences that led them to the specialty of medicine that they now practice. In a strange way, I felt that the accountability that the podcast so publicly garnered, had positioned me into a place of mutual respect in spaces that I had previously felt unnoticed.

Erica 28:26

As noted earlier, becoming a podcaster myself introduced me to more rare disease and disability-themed podcasts. In finding and following these podcasts on social media, I was introduced to various styles and approaches and the art of sharing our stories, each unique to the skills and strengths of the hosts. I developed friendships with fellow podcasters and I was invited to join a disability parenting podcasting group that meets monthly to share our experiences. In my efforts to create a virtual community for my caregiving peers, I came to find that more communities existed where our identities intersected as caregivers, and story sharers.

Erica 29:12

Knowing that my style differed from what already existed, I edited each new episode with sincere excitement knowing that it was content I wanted to hear all along, that it was exactly what would have helped me when I needed it most. With each new episode, I felt my voice grow stronger. My confidence in navigating difficult subjects and socially taboo topics. It grew stronger as well. In speaking with each guest, I was left with a jubilant feeling of weightlessness from the conversation that was had and the connection that was made. Not only do we form a connection, but I'm allowed access to explore many aspects of the guest lived experiences that made them so completely relatable as a person. And in return, I felt better about sharing similar aspects of my own lived experiences as well. The intimate exchange of our experiences is a secret ingredient that adds to the richness of authenticity in each episode.

Erica 30:20

One listener’s response provided all the assurance I needed. They stated, and I quote, "Hearing perspectives from parents and doctors of medically complex children has been huge for me. Even as a close friend of a mother of children with complex medical needs, and hearing her stories; it has been eye opening to hear frank discussions of the medical equipment, time, outside help like nurses, hours driving to hospitals, hours in the hospitals. And the list goes on and on...to the amount of care and time these parents have to constantly advocate for, for the sake of their child. Something that comes so easily to some families is made nearly impossible for families with medically complex members. We all do the best we can for our families. And it's just really sad to see how systems have been built to make it so hard for families that require more care because of extenuating circumstances." End quote.

Erica 31:28

It feels like an understatement to say that this podcast has transformed me. As it grew and evolved, I grew and evolved as well. Most notably, I was forced to reconcile with my perfectionist tendencies, which were rivaling my personal limitations. As I listened to the guest after guest share about the very things that made them so relatable as humans, I had to learn to embrace that same humaneness within myself: imperfect, fallible, loving, and caring - just like the guests on the show who I greatly admire. I ended this podcasting project with an entirely new set of skills, a humbled understanding of the power in a person's story, a renewed sense of self-awareness, and an inner peace that cannot fully be articulated with words.

Erica 32:26

It is not lost on me that the success of this project was made possible by the help of many women across many different fields. From my guests, fellow caregivers, friends, family, professionals, academic advisors, professors, artists - more women than I can list how to hand in the fruition and success of this podcast in this honors thesis. Thanks to this entire experience, I was led to yet another amazing community of women who welcomed me into their organization, where I now have the privilege of helping to advocate for individuals with intellectual and developmental disabilities at The Arc of Illinois. I recognize this to be a common theme in my life. And I'm extremely proud to continuously find myself within a community of women who help to lift one another up to be successful in their pursuit of success and happiness.

Erica 33:44

Sharing the Mic (not to be confused with dropping the mic)

Erica 33:52

There is one factor in this project that I feared would place an expiration on the podcast as a whole. That intimate exchange which was shared between my guests and myself, that secret ingredient of authenticity that I mentioned - that was the direct result of having known each guest in some capacity, personally or professionally prior to recording our episode. You see, there already existed a relationship and a mutual trust between each of us. I knew that I could not have these same conversations with a person or a provider that I had never met. I knew that I could not speak confidently about a disability or medical condition that I had no personal experience with, nor informed knowledge of. Above all else, I knew that there were more stories beyond my own, and that it was equally important to use this podcast as a platform to share those stories as well.

Erica 34:54

And the listeners overwhelmingly agreed, as evidenced by their wish for future episodes. They want to hear more from the perspective of parents who have disabilities. They want to hear more about people with varying backgrounds and life histories. They want to hear more about life with non-visible disabilities. They want to hear more stories about how to be better caregivers and advocates for disabled adults. They want to hear about the quality of life conversations from the perspective of a patient, and they want to hear more about health care advocacy.

Erica 35:32

These are all highly important and relevant topics that disability podcasters should be keen to address. As a disabled person and caregiver, having created this space to publicly account for my experiences, it's been a privilege. In acknowledging this privilege, I feel it is critical to share this platform with others.

Erica 35:59

In future seasons of the podcast, I will be sharing the podcasting stage with a new guest-host every season, who will join me and sharing about their own complex journey with disabilities and rare diseases. They will be having conversations with the people who have been involved in their own medical journey, both personally and professionally. My presence will remain consistent in the podcast. The first season of Atypical Truth set the mood and the style for future seasons to come, and with my own voice continuously woven into the experience, I will assist others as they provide the same intimate glimpse into their own lives.

Erica 36:41

So stay tuned next week for this special sneak peek, or should I say a special invitation to eavesdrop, on what is to come in Season Two of Atypical Truth starting December 28.

Erica 36:57

The beautiful music that greets us at the beginning and end of each episode is performed by my favorite contemporary music collective Amiina. The cover art for Atypical Truth was designed by Kendall Bell.

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