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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.

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


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.