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Episode 1: How Do I Do This?

Episode 1: How Do I Do This?

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 Here begins the journey of the Spontaneous Mutation podcast with Halley Elwell. Who is Halley? What’s going on with her face and why is she singing about it? The podcast opens with Halley sharing her experience living with neurofibromatosis and how the pandemic and a lesson in civil inattention made her realize that the way she was “getting by” was no longer working. She shares snippets of the interviews from her 5 guests and wonders what would happen if we take a medical term and use it as an artistic lens to change the way we look at facial difference. Thus, the Spontaneous Mutation project was born: an album and a podcast aiming to reclaim the narratives around facial difference with a song matched up for each episode. This episode features 3 songs off the Spontaneous Mutation record: “How Do I Do This?” “The Raven and the Ponderosa Pine” “Anomaly” Keep up with Halley and the Spontaneous Mutation Podcast: spontaneousmutationpodcast.cominstagram.com/spontaneousmutationpodcastyoutube.com/@halleyelwellmusic --- TRANSCRIPT: Hello and welcome to the Spontaneous Mutation podcast. I am your guide, Halley Elwell, and I'm a singer-songwriter with a facial difference. You may be asking, "what is Spontaneous Mutation?" and that's a really good question. In biology, it's a naturally occurring genetic event that happens by chance. There are no known outside factors, and no known cause. It just happens. Simple, right? Except when your cells have mutated, and they make you look different than the humans around you. And although cells have been mutating since the beginning of time, stories start to get told about these people who look different. And those stories come in all shapes and forms, and they inform how we treat other people. I have neurofibromatosis. NF for short. I have red marks on my chest. I have what are called plexiform neurofibromas on my jaw and neck. And it looks different. It can probably be a little alarming to see if you're not sure what's going on. So, you know, I've gotten over this stage in my life where I've kind of thought nobody noticed. Um [laughs] I see you looking at me. And I see the confusion. I know. I know you notice. But what I can't get over is that I was told all my life that my face didn't matter. Just ignore it, and keep living your life. But the public has not seemed to get that memo. And it seems to be even worse since the pandemic. And I would argue during that time a lot of us became addicted to social media and became little voyeurs. Not gonna lie, the cognitive dissonance of being told all your life you're not supposed to talk about something and then having people constantly stare at you and be fixated on on that something all the time, kind of breaks your brain. And it was truly the catalyst for Spontaneous Mutation, which is about reclaiming the narratives around facial difference and how we can use storytelling to do it. I have decided to do something kind of scary for me, which is to tell you the story of me. I was a really sensitive little girl who was diagnosed with neurofibromatosis when I was eleven. And I had no words for my world except for the ones given to me by my doctor. You are an anomaly. You have a deformity. It was a spontaneous mutation. Now, it goes without saying this was completely disempowering but there weren't any other narratives around and I just kind of looked around me and went with the flow. And I came up with a strategy that worked [laughs] pretty well for me for a while: be as nice as possible. Be as smart as you can. Be funny, but don't steal the spotlight or folks will start asking questions. And don't talk about your condition unless you want to raise money for research. [laughs] But don't forget to sing, because they like it when you sing. And maybe you have your own version of this. The part of you that society wasn't really ready to accept. The sad part. The different part. The part that really, really wanted to belong. You made do with the conditions you were presented with to get by until you could get out. And maybe you never got out. I'll tell you, my strategy worked for most of my life [laughs]. But then the pandemic came, and I got really, really, derailed. And the reason was because of masking. Um, wearing a mask for the pandemic made me realize I was being ignored and for the first time since I was about eleven years old, I was experiencing something called "civil inattention" which is a term coined by sociologist Irving Goffman. So civil inattention is the silent agreement those of us living in cities kind of live by. We pretend we don't hear our neighbors fighting next door. We pretend we are not pressed intimately close to a stranger on the train. In short, we mind our own business. We ignore people, and sometimes it's to our own detriment. But when you have a physical difference, you don't get ignored. You become a walking museum. Operating hours are anytime you decide to leave your house. Some ...
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