This is the final episode of the Spontaneous Mutation podcast, where the story wraps…for now!

Halley shares that throughout the podcast she was searching for a story she could relate to about a dysfunctional family to discuss the extra layers of grief that get mixed into self-perception. So she shares more of her own struggles to better understand why it took her so long to reflect on the impact her condition and facial difference has had on her socially.

She segues into the origin story of the song, “The Raven and the Ponderosa Pine,” and ties it to one of the most enduring American tropes, that of the lone cowboy, and how easy it is to fall into isolation and despair when you believe yourself to be alone.

In the 6th episode of Spontaneous Mutation podcast, Halley recalls a turning point in her healing when she began to remember the good memories in her life, and specifically the love she experienced from her community, friendships, and family.

Her guest, author and humorist, David Roche shares stories from his life, reflections on activism, and if you listen closely, a guidebook to following your heart.

The song you hear on this episode is called "Love Is."

Bio: David Roche is an inspirational humorist and motivational speaker. In addition to appearing internationally as a guest speaker and headliner, he has been in multiple films and documentaries. In 2022 he was awarded the Order of Canada for his contributions to the field of disability art.

His first book, The Church of 80% Sincerity, is based on his signature one-man show of the same title. David was born in Hammond, Indiana, the eldest of seven children. His sixteen years of Roman Catholic education included four years studying to be a priest at Saint Lawrence Seminary in Wisconsin. And as you’ll hear throughout the interview, David’s life did not go as planned. Lucky for us, he has generously and hilariously shared so much of what he has learned along the way in his recently published book, Standing at the Back Door of Happiness: And How I Unlocked It

Links:

David's Website

"Love at Second Sight"

Church of 80% Sincerity

Standing at the Back Door of Happiness: And How I Unlocked It

Face Equality International

"Hollywood Must Face Up to the Way It Uses Disfigurements like Mine as a Metaphor for Fear"

Temporary: The Only Constant is Change

In episode 5 of the Spontaneous Mutation podcast, we welcome researcher and disability advocate Rasheera Dopson.

Halley opens the episode describing a particularly hard day she had after a check up at the hospital while she was taking what was being called the “miracle drug” for neurofibromatosis, which ultimately didn’t work for her. She talks about the hardship of putting your hopes in something that ultimately makes you really sick, and the decision to stop treatment to take care of yourself.

Rasheera shares about her Beauty with a Twist brand and discusses different kinds of beauty, walks us through applying a disability lens to intersectionality, and her experience working through the aftermath of a surgery she had on “Botched”, a plastic surgery reality show.

The music for this episode is called “Temporary.”

Bio: Rasheera Dopson (she/her) is a disability advocate, researcher, and digital storyteller dedicated to advancing equity for women and girls with disabilities. She is a PhD student at Northern Arizona University and the founder of the Womanhood and Disability podcast, where she amplifies stories at the intersection of disability and womanhood.

Links:

Rasheera's Facebook

Rasheera's Instagram

Goldenhar Syndrome: Learning to Embrace My 'Beauty with a Twist'

Rasheera Dopson: Black Women Leaders and Disability Justice

WomanHood and Disability Podcast

In this episode, titled “Dear Lucy,” Halley invites activist and Faceout Project founder Sora Kasuga to the Spontaneous Mutation podcast to discuss the legacy of Lucy Grealy’s memoir, Autobiography of a Face, published in 1994.

Sora discusses her many spontaneous mutations in life and posits that we have not yet realized the social aspects of what it means to fully accept yourself as different and that might be the evolutionary key to advancing our society forward. She discusses her own ‘coming out’ story and honors the “disability doulas” who have helped her along the way, mentioning Alice Wong’s Disability Visibility anthology as a starting point.

The Music for this episode is “Dear Lucy.”

Bio: Sora Kasuga is the founder of the FaceOut Project, an activism hub and home for the global Facial Difference community to come together and collectively face out toward the world. Sora is a writer, a speaker, a model, circus artist, and face equality activist.

Sora’s experiences as a Japanese American, neurodivergent, queer person with a facial difference have informed and inspired their work in what Sora calls the “beautiful and challenging intersection of race, gender, sexual orientation, and disability.”

Links:

Faceout Monday Night Activism Cohort

Adult Facial Difference Community facebook group

Stella Young Ted Talk

Autobiography of a Face by Lucy Grealy

Disibility Visibility - Alice Wong

FACES National Craniofacial

Children’s Craniofacial Association

In episode 3, Halley welcomes author Amanda Leduc to the Spontaneous Mutation podcast where they discuss her book, Disfigured: On Fairy Tales, Disability, and Making Spaces.

Halley opens the episode sharing her life-long fascination with the Greek myth of Daphne, a water nymph who was turned into a tree to escape the pursuits of the God Apollo. Halley was inspired to write this song and use Daphne as a metaphor for making the decision to stop pursuing surgery on her jaw. In her conversation with Leduc, they discuss expectations of stories and who gets to be the hero or princess, and how we make room for disabled stories. They also discuss creativity and writing, criticism, and the major turning points in Amanda’s life that led her to write the book.

The song playing on this episode is called, “Daphne”

Bio: Amanda Leduc joins us today to talk about her work and experience as a disabled creative and activist. In addition to Leduc’s book Disfigured: On Fairy Tales, Disability, and making spaces, which was shortlisted for the 2020 Governor General’s Award in Non-Fiction, she is the author of the Centaur’s Wife, The Miracles of Ordinary Men, and her soon to be published new novel Wild Life. Amanda has cerebral palsy and is a sought after speaker across North America on accessibility and the role of disability in storytelling.

Links:

https://amandaleduc.com/

https://amandaleduc.com/media/

https://www.instagram.com/amanda.leduc/

https://www.facebook.com/AmandaLeducAuthor

The “hope quote” that Amanda mentions during the podcast is hard to pin down, but we think it may be this quote from Jon Foreman, lead singer of Switchfoot: “hope is a defiant thing: hope stands on the bloody knuckles of a boxer, with bruised eyes and bloody teeth, broken ribs and a gut-wrenching smile. Hope rises up from the dirt, defiant and proud, beaten but undefeated."

In episode 2 of Spontaneous Mutation, Halley welcomes Social Psychologist Dr. Kathleen Bogart. Halley opens the episode sharing her experiences leading up to her neurofibromatosis diagnosis, and what is felt like to be called a “medical anomaly” by doctors. This, as well as an increasingly tumultuous home life, left her feeling like a burden. She talks about her early teen years and how poetry and female-fronted rock bands gave her a space to channel her confusion and anger.

Dr. Bogart shares her own experiences with feeling like an anomaly, what it was like to find the Moebius Syndrome community, and then the larger facial difference community. She educates us on the 3 most common models of disability and discusses her research in the field of rare disease.

The song for today’s episode is called: Anomaly

Dr. Kathleen Bogart bio:

Dr. Bogart is an associate professor of psychology at Oregon State University (OSU). She earned her Ph.D. in experimental social psychology from Tufts University in 2012. As a person with a rare disease, she has a passion for researching and educating about the psychosocial impacts of rare diseases, especially the effects of social support and stigma. Dr. Bogart is the recipient of numerous awards and honors and her work has been featured in multiple publications including the Atlantic and the New York Times. She also maintains a blog for Psychology Today called “Disability is Diversity” and one of my favorite articles from that blog is called “ The Elephant in the Room, explaining facial difference.” It’s a great introduction to the world and experience of living with a facial difference.

Keep up with Dr. Bogart:

Kathleen’s Disability is Diversity blog

https://www.psychologytoday.com/us/blog/disability-is-diversity/202301/the-elephant-in-the-room-explaining-facial-difference

Ted Talk:

https://www.ted.com/talks/kathleen_bogart_the_psychology_of_ableism_jan_2022?subtitle=en

Oregon State Faculty website:

https://liberalarts.oregonstate.edu/directory/kathleen-bogart

Keep up with Halley and the Spontaneous Mutation Podcast:

• spontaneousmutationpodcast.com
• instagram.com/spontaneousmutationpodcast
• youtube.com/@halleyelwellmusic