Hosted by Erica Jolene | Transcription HERE
Part Four of Telling the Atypical Truth: Disability Community-Building Through Podcasting. Reading from sections “Free of Judgment,” “Layered Lives,” and “Humans First, Labels Later.” Erica shares validating data, confirming that she was not alone with her feelings of social isolation. Using current research and scholarly work, she shares about feelings amongst caregivers and the importance of physicians not only validating the experiences of caregivers, but also encouraging them to seeks out resources as a valuable member of the team. Early episodes from Season One are referenced in this episode.
A caregiver's mission: finding our people and becoming an expert.
The strength and tenacity of my peer-parent-caregivers, it humbles me on the daily. When you combine our tireless motivation and our unconditional love with current research and medicine - that is an unstoppable force!
In today's episode, I share more about current research that details the benefits of medical professionals recognizing caregivers as being essential, if not critical, members of the care team as a whole. Enjoy today's clips from Season One, episode "Love Needs No Words," by my friend and fellow medical mom, Jenny Park.
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:
Currie, G., & Szabo, J. (2020). Social isolation and exclusion: The parents’ experience of caring for children with rare neurodevelopmental disorders. International Journal of Qualitative Studies on Health and Well-Being, 15(1), 1-10.
Green, S. E. (2003). They are beautiful and they are ours: Swapping tales of mothering children with disabilities through interactive interviews. Journal of Loss and Trauma, 8(1), 1–13.
Rupert, D. J., Moultrie, R. R., Read, J. G., Amoozegar, J. B., Bornkessel, A. S., O’Donoghue, A. C., & Sullivan, H. W. (2014). Perceived healthcare provider reactions to patient and caregiver use of online health communities. Patient Education and Counseling, 96(3), 320–326.
Currie, G., & Szabo, J. (2018). “It is like a jungle gym, and everything is under construction”: The parent’s perspective of caring for a child with a rare disease. Child: Care, Health and Development, 45(1), 96–103.
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 to scholarly work and current research. I've provided links to these works and the thesis in the show notes.
Free of Judgment
I want to start by saying that I was incredibly fortunate to have landed the dream match of a thesis advisor when Dr. Sandy Pensoneau-Conway agreed to advise and really mentor me throughout this experience. She professor of communication studies who has a special interest in how we as a society, communicate about disabilities.
One of the first readings she sent to me was a powerful one by Dr. Sara E Green, titled, “They are Beautiful and They Are Ours: Swapping Tales of Mothering Children with Disabilities Through Interactive Interviews.” In this research which examined the narrative exchange through interactive interviews with mothers of disabled children, Green hit to the core an issue that may caregivers experience - where except among very close friends, many parents of children with disabilities often feel they need to “withhold or at least severely edit” their parental experiences when in social situations and conversations with other parents. With our experiences being unlike or atypical from the experiences of parents to non-disabled or medically fragile children; this often results in a reaction of sympathy, discomfort, or awkward silence. One listener respondent, who is also a personal caregiver, described the following, and I quote:
"I follow three mothers of medically complex children on Instagram. Through their honest stories, I have learned about the harm done by ableism, have had my compassion expanded by the sharing of their profound pain, and have learned new ways to understand my daughter and her situation. I have also seen these vulnerable women be shamed by uncaring and hateful comments. I better understand toxic positivity. I see these women trying to do their very best for their children, and by posting a portion of their hard lives, trying to make the world a better place for themselves and their children."
And I knew all too well what it felt like as a caregiver to be indirectly, but strictly monitored by society. Due to the vulnerability of children with disabilities and the history of exploitation they've experienced, the content shared by parents of children with disabilities, it is more heavily monitored and policed by society than the content shared of parents of typically developing and non-disabled children. In everything that we publicly do, say, or post; we run the risk of offending someone making someone feel uncomfortable and potentially oversharing. I often felt like the weight of our experiences was too heavy for public consumption. Conversely, I knew that if I did not share about my experiences, however heavy they felt or uncomfortable and made people feel, these experiences - my experiences - would never get closer to becoming destigmatized.
As the host of a publicly broadcasted podcast, I realized that it was my responsibility to set the rules of engagement and to be an example of openness. Here is a clip from an earlier episode in Season One explaining just that:
I want to remind everyone at this podcast will be a safe space where people can share about their vulnerable experience without the fear of judgment from others. To set that example, I felt it would be best to start this off by sharing some of my own thoughts and feelings of a very personal nature, about the things that have influenced me to start this podcast. This will be far from perfect. So take caution. I'm going to mess up, I'm bound to say the wrong thing, and I will certainly stumble in my efforts of using the correct language. Because that is what happens when you're working to unlearn a lifetime of internalized ableist thinking. And I say that as an adult, who is only now learning how to embrace my disabled self, rather than trying to prove myself in spite of my disabilities.
Researchers Currie and Szabo found that the personal narratives of parental caregivers have historically remained unvoiced due to the parental fears of social misconceptions and negative stigmas associated with illness and disability. They found that parents of children with neurodevelopmental disorders experienced higher levels of stress compared to their peer parents of neurotypical children. When examining the experience of social isolation and exclusion of parents who care for children with complex conditions, they found that parents express feelings of detachment, fear, and stigma from within the medical, social and family settings. Additionally, they reported that these parents felt further isolated because their children were perceived to be socially and medically different. And the rarity of their conditions resulted in the dismissal of their experiences, their struggles, and their needs.
It was revealed that when interacting with other families of typically-developing children, parents of children with rare diseases expressed feelings of guilt and discomfort from feeling like a social taboo due to social stigmas surrounding their unconventional parenting struggles with a disabled child. In line with the feelings that I know I've personally had, they found that parental caregivers often felt judged more harshly than other parents for their reactions when standing up and advocating against the discrimination of their children. And I want to just take this one step further...while I'm not stating this from any specific article, I just know this to be true based on personal experiences, and the stories I hear from the work that I do. If I have ever felt judged harshly for my reaction in advocating for my children, the reality is, parents who are multiply marginalized experience that harsh judgment and a policing of their reactions when standing up and advocating for their children.
At first, I deeply feared of the judgment, and I was extremely careful with every word I meticulously chose to speak. Eventually, I grew braver, and I was inspired to start expressing my less-censored thoughts and feelings. Still, with each new episode, I perpetually feared that I had gone too far, I had said too much, and I had surely offended someone who I cared about. However, I am happy to share that these fears that consumed me were eradicated by the public reactions to each episode. With each comment on social media, with every private message of encouragement, and each person who relayed to me that they related deeply to the content on the show; I realized that the more that I spoke my truth, the more listeners embraced my lived experiences, and the more they wanted to hear. One listener and fellow caregivers stated the following, and I quote:
"I love how you stress the aspect of trying not to be judgmental in this forum. I think being judged as both a parent or caregiver and a disabled person, it makes it difficult to trust yourself and others. Keep this conversation going so more people become acquainted with perspectives and choices faced by loved ones who have or care for those with disabilities." End quote
Reactions and responses such as these, they informed me that I had created a safe space as I had intended and that our truths, no matter how taboo they may be, are worthy of being heard. That's right, our stories matter. I've since come to learn that this raw vulnerability shared on the podcast, it is precisely what makes it appealing. Vulnerability turns out to be the secret ingredient, and it results in content that captivates and intrigues the masses. As humans, we intrinsically want to know that others share the experience of navigating hardships. Providing a safe space for the guests and the listeners to explore these sensitive subjects, however far we may be from having them all figured out, ft is what facilitates the feelings of connection for the audience.
There are many layers of the lives lived for those involved in complex needs caregiving, and I personally crave to hear the raw and unfiltered truth of them. Not only do I crave to hear stories of my peers in the trenches of this life, I also want to hear more about the lives of the people who help to pull us out of those trenches, and when they can't pull us out, they come down and join us.
I strongly believe that sharing our personal narratives, or our stories, it provides an opportunity to make virtual connections through learning about our common experiences and our differing perspectives. In the research I mentioned earlier, on "Interactive Interviewing and Narrative Exchange Between Mothers of Disabled Children," by Dr. Green, they describe that the goal of personal narrative is to facilitate change and personal growth, that this simple act of telling one's story has therapeutic benefits. In this study, Green references the narrative research work of Romanoff, citing that "the therapeutic value now only resides in the telling of the story, but also in the listening of the story."
As noted by Dr. Green, the community of people with disabilities has long expressed growing frustration with professionals from a wide variety of disciplines whose work has left them feeling marginalized and even pathologized, rather than understood, respected, and valued. Currie & Szabo’s work stresses the importance of allowing parental caregivers the ability to voice their perspective. In doing this, it validates the caregiver’s personal experience and the systemic success and failures of the healthcare and social systems. They argue that not only would this reduce feelings of isolation and exclusion, it would also assist professionals with the development and implementation of policies and services that could directly benefit the lives of parental caregivers, and the children they care for.
I will never forget how overwhelming it felt to not only be a new mom, but to suddenly learn the skills of being a nurse, neurologist, therapist, caseworker, and equipment technician. Having a child with a rare diagnosis often means that by default, you become the expert on them because the likelihood of your care team having an experience with the rare condition, it's fairly slim, and that is further reduced when your child has a perplexing condition that remains undiagnosed. Many parents have no choice but to research their child's condition beyond the limited information that they're given in the clinical setting. An excerpt from Season One, titled "Love Needs No Words," it's worth quoting at length. It details the personal account between a fellow parental caregiver Jenny Park, who you heard from last week, and myself as we discuss our own search for information from our peers in a Facebook support group for parents of a child with the same seizure disorder as our own children:
They will admit we see things that are comparable. And based on maybe some certain developmental issues, they can say with competence. Maybe this is possible or may not be possible. But at the end of the day, it's hard to say when it comes to these rare genetic mutations, so...
They just don't know. And I think our kids are such a step ahead of science at this point, that we have to learn everything that we can.
And isn't that crazy?
Yeah, that for many years, I think that broke my heart the most like my daughter will not get the cure, she probably won't see in her lifetime, the medication that's made that can actually help her seizures or some treatment that might stop these collaterals. What's helped me is, I feel like part of Josie's purpose is to maybe help, you know, the next time a doctor does see a kid with the same diagnosis. Maybe Josie's information in her life can help further kids and further treatment.