On Being Ill
On Being Ill is a podcast that aims to platform innovative thinkers working at the intersections of creativity and disability. Executive produced by poet, academic, and author, Dr. Emilia Nielsen, you’ll hear conversations about illness, chronic pain, crip joy, and how we’re harnessing the capacity of our creative praxes to build worlds for disability.
At On Being Ill, we aim to unsettle deeply rooted beliefs around ability and disability that have entwined origins and implications in colonial thinking and actions. We invite you to learn alongside us by visiting our resources page where we have brought together some of the resources that have expanded our understanding of the connections between settler colonialism and ableism.
Our Seasons
Season 1:
Conversations with
Writers on Creativity, Disability,
and Identity
In season one of On Being Ill, we ask ourselves how creative writing can help us to envision radically different futures for disabled and temporarily abled communities alike, why we can’t do it alone, and what happens when we fully embrace the generative capacity of disability and chronic illness.
Season 2:
Conversations with Interdisciplinary Visual Artists on Creativity, Disability, and Identity
In season two of On Being Ill, we talk to visual artists working towards disability justice. We ask how creative practice can turn towards radical justice, what art can look like when we center care and community, and the importance of work that centers our interests, pleasure, and the things we love.
Season 3:
Conversations with Emerging Talent on Creativity, Disability, and Identity
In season three of On Being Ill, we talk with guests who are using creativity to make impact early in their careers. We explore how music, writing, visual art, and nature feed into expression and belonging and why putting health over productivity is essential for wellness, good relationships, & meaningful work.
Season 4:
Conversations with Indigenous Creatives on Cultures of Care, Creativity, Disability, and Identity
In season four of On Being Ill, we sit down with guests whose practices embody Indigenous storytelling and environmental guardianship. We explore how planetary health, documentary film, and ‘functional junkists’ come together in the journey towards sustainable and joyful futures.
Season 5:
Conversations with Scholars on Accessible, Sustainable Futures, and Creativity, Disability, and Identity
In season five of On Being Ill, we talk with scholars using words to challenge what access, accessibility and sustainability might look, sound, and feel like. We explore what might be gained, for stutterers and non-stutterers alike, by interrogating fluency privilege, if numbers or words ever really convey the feeling of pain, and what might we hear if we stop to listen to the bees.
Our Episodes
Season 1
Episode 1:
Chronic Pain as a Relational Experience
Season 1
Episode 2:
“The Field Empties Out and That’s Where Things Can Grow”
Season 1
Episode 3:
Refusing to be Disciplined by our Discipline
Full Episode Details
Season 5: Conversations with
Episode 1: Deconstructing Fluency Privilege
With Joshua St. Pierre
See season 5, episode 1 transcript and show references (PDF).
Executive Producer: Emilia Nielsen
Producer(s): Emily Blyth and Coco Nielsen
Music by: @princeshima
Episode Title: Deconstructing Fluency Privilege
Guest: Joshua St. Pierre
How does the logic of speech pathology affect stutterers and non-stutterers alike? Can we deconstruct, unsettle, and bend fluency privilege in favour of embracing vocal difference? And how might one go about designing an interactive knowledge platform with this goal in mind? In this episode, Emilia sits down to discuss these questions and more with writer, professor, and Canada Research Chair in Critical Disability Studies, Dr. Joshua St. Pierre.
You can find Joshua’s work at JoshuaStPierre.com and you can check out The Stuttering Commons at StutteringCommons.org.
Episode 2: Listening to the Bees
With Jenna Butler
See season 5, episode 2 transcript and show references (PDF).
Executive Producer: Emilia Nielsen
Producer(s): Emily Blyth and Coco Nielsen
Music by: @princeshima
Episode Title: Listening to the Bees
Guest: Jenna Butler
How might one begin to transform a remote bush quarter in Northern Alberta into an off-grid organic farm and artist residency? Can citizen science help us keep track of ecological change? And why oh why must we listen to the bees? In this episode, Emilia sits down to discuss these questions and more with writer, farmer, and environmentalist, Dr. Jenna Butler.
You can find Jenna’s work at JennaButler.com and you can check out what Larch Grove is up to at LarchGroveFarm.com.
Episode 3: Redefining Accessibility
With Anna Veprinska
See season 5, episode 3 transcript and show references (PDF).
Executive Producer: Emilia Nielsen
Producer(s): Emily Blyth and Coco Nielsen
Music by: @princeshima
Episode Title: Redefining Accessibility
Guest: Anna Veprinska
What role does noise pollution play on our embodied health and the health of the planet? How can the seemingly small act of writing poetry connect us to the biggest historical and contemporary issues? Does pain have a number? And if not, why are we still using pain scales? In this episode, Emilia sits down to discuss these questions and more with poet and scholar, Dr. Anna Veprinska.
You can follow Anna on X and instagram @SplitEndedPoem
Season 4: Conversations on Cultures of Care with Indigenous Creatives
Episode 1: Creating Art for the People
With Moneca Sinclaire
See season 4, episode 1 transcript and show references (PDF).
Executive Producer: Emilia Nielsen
Producer(s): Emily Blyth and Coco Nielsen
Music by: @princeshima
Episode Title: Creating Art for the People
Guest: Moneca Sinclaire
What role can writing, reflection, and the help of a good counsellor play in a journey towards healing? How can storytelling help to complexify the field of diabetes research? And why, amidst a culture that expects self-doubt, is it so important to sometimes just say “eff this, I’m doing it anyways!” In this episode, Coco sits down to discuss these questions and more with Dr. Moneca Sinclaire, a multidisciplinary Nehinan artist and researcher who upcycles trash into interactive sculptures that even the teenagers down the block want to play with.
You can follow Moneca on Instagram @moneca_sinclaire.
Episode 2: Cultivating Economies of Care
With Angele Alook
See season 4, episode 2 transcript and show references (PDF).
Executive Producer: Emilia Nielsen
Producer(s): Emily Blyth and Coco Nielsen
Music by: @princeshima
Episode Title: Cultivating Economies of Care
Guest: Angele Alook
What projects might you find in the research portfolio of an Indigenous feminist sociologist with a penchant for labour studies? Is it possible for a 6-person team to co-author a truly cohesive book on climate change? And how do we go about restoring balance in a world based in greed and excess? In this episode, Emilia sits down to discuss these questions and more with Dr. Angele Alook, a multidisciplinary scholar and filmmaker whose recent documentary, Pîkopayin, explores the impact of industry on her home community of Big Stone Cree Nation.
You can watch Angele’s film Pîkopayin at JustPowers.ca.
To learn more, check out Angele’s book, The End of This World.
Episode 3: Tracing Stories like Rivers
With Lyana Patrick
See season 4, episode 3 transcript and show references (PDF).
Executive Producer: Emilia Nielsen
Producer(s): Emily Blyth and Coco Nielsen
Music by: @princeshima
Episode Title: Tracing Stories like Rivers
Guest: Lyana Patrick
Is there a connection between storytelling and wellbeing? How can we find beauty among lands and waters devastated by industry? And how does land-based knowledge and teaching defy disciplinary divisions and instead invite collaboration? In this episode, Emily sits down to discuss these questions and more with Dr. Lyana Patrick, a community-engaged researcher and filmmaker whose upcoming feature, Nechako, explores the impact of industry on the Nechako river and its people.
Be sure to stay tuned for updates so you don’t miss her upcoming feature film Nechako.
You can follow Lyana on Instagram @LyanaPatrick.
Season 4 of On Being Ill is supported by H.E.A.L., the Hearts-based Education and Anti-Colonial Learning project, which receives its funding in part from Indigenous Services Canada.
Season 3: Conversations with Emerging Talent on Creativity, Disability, and Identity
Episode 1: Bending Into So Much More
With Tea Gerbeza
See season season 3, episode 1 transcript and show references (PDF).
Executive Producer: Emilia Nielsen
Producer(s): Emily Blyth and Coco Nielsen
Music by: @princeshima
Episode Title: Bending Into So Much More
Guest: Tea Gerbeza
What might it look like to bridge the mediums of poetry and paper quilling? How can pain be represented visually? And what the heck is scanography anyways? In this episode, Emilia sits down to discuss these questions and more with Tea Gerbeza, a queer, disabled, and neurodivergent poet, writer, and multimedia artist who works with paper in her visual art, but also creates digital works on her scanner.
You can find more of Tea’s work at Tea’s website.
Be sure to follow Tea on Instagram @poetgerby; to see Tea’s paper quilling work, follow @papergerby
Episode 2: Reclaiming a Future Through Music
With Kate Lahey
See season 3, episode 2 transcript and show references (PDF).
Executive Producer: Emilia Nielsen
Producer(s): Emily Blyth and Coco Nielsen
Music by: @princeshima
Episode Title: Reclaiming a Future Through Music
Guest: Kate Lahey
When is it time to step back from community organizing to take care of one’s own health? What happens when you go from listening to music alone in your bedroom to performing on stage alongside your very best friends? And how does hope help to reclaim a future stolen by trauma? In this episode, producer Coco Nielsen sits down to discuss these questions and more with Kate Lahey, a writer, musician, and educator whose work explores intergenerational trauma, material and visual culture, and memory in Newfoundland.
You can find more of Kate’s work at Kate’s website.
Be sure to follow Weary on Instagram @WearyBand. To listen to Weary’s music head to bandcamp or wherever you stream music.
Episode 3: Ushering in a New Kind of Spiritual Health
With Stephanie Blyth
See season 3, episode 3 transcript and show references (PDF).
Executive Producer: Emilia Nielsen
Producer(s): Emily Blyth and Coco Nielsen
Music by: @princeshima
Episode Title: Ushering in a New Kind of Spiritual Health
Guest: Stephanie Blyth
How can we integrate more meaning-making into our everyday? What’s the connection between healing and spiritual health? And why is it so important to slow down and feel into something bigger than ourselves? In this episode, producer Emily Blyth sits down to discuss these questions and more with her sister, Stephanie Blyth, a spiritual health practitioner who works in acute care.
Season 2: Conversations with Interdisciplinary Visual Artists on Creativity, Disability, and Identity
Episode 1: Telling Stories to Change Systems
With Syrus Marcus Ware
See season 2, episode 1 transcript and show references (PDF).
Executive Producer: Emilia Nielsen
Producer(s): Emily Blyth and Coco Nielsen
Music by: @princeshima
What does storytelling have to do with systems change? How do we build care into our practice and embrace interdependence as mad, deaf, and disabled communities? And what does it look like to turn towards the things that we love? In this episode, producer Emily Blyth sits down with Dr. Syrus Marcus Ware, a scholar, playwright, author, and artist who is helping to build a better future – a future where trans and disabled people live long enough to become elders and where artists have plenty of room to play.
You can find more of Syrus’s work on Syrus’s website.
Be sure to follow Syrus on Instagram @SyrusMarcus
Episode 2: Creating at the Threshold
With Kim Edgar
See season 2, episode 2 transcript and show references (PDF).
Executive Producer: Emilia Nielsen
Producer(s): Emily Blyth and Coco Nielsen
Music by: @princeshima
What happens when you create a micropress dedicated solely to publishing the work of Northern comic artists? What does art look like at the threshold between genders; between life and death; between material and spiritual worlds? And why is it important to watch ladybugs lay eggs? In this episode, producer Coco Nielsen sits down with Daswson-based multidisciplinary artist Kim Edgar to talk about the importance of cultivating artistic community in the North, why healthy food and secure housing is the first step towards disability justice, and how following interest and pleasure leads to an ever-evolving artistic practice.
You can find more of Kim’s work on Kim’s website.
Be sure to follow them on Instagram @DeadBirdParty
Episode 3: Quilting a More Just Future
With Jenna Reid
See season 2, episode 3 transcript and show references (PDF).
Executive Producer: Emilia Nielsen
Producer(s): Emily Blyth and Coco Nielsen
Music by: @princeshima
What happens when you join the art of quilting with a rallying call for radical justice? How can we make artist residencies more accessible? And why does it take so long for many of us to claim the title of “artist”? In this episode, Emilia chats with Dr. Jenna Reid, a textile artist who works to uplift and celebrate disabled artists both through her activism and her work as artistic director of Kickstart Disability.
You can follow Jenna on Instagram @Fieldnotes_By_JennaReid.
And be sure to check out Kickstart Disability on Instagram @KickStartDisability
Season 1: Conversations with Writers on Creativity, Disability, and Identity
Episode 1: Chronic Pain as a Relational Experience
With Travis Chi Wing Lau
See season 1, episode 1 transcript and show references (PDF).
Executive Producer: Emilia Nielsen
Producer(s): Emily Blyth and Coco Nielsen
Music by:
@princeshima
Is vaccine hesitancy unique to our contemporary era? What happens when the way we talk about pain changes from the spiritual and soulful to a purely corporeal experience that can and must be medicated away? And whose pain continues to be taken seriously while the pain of others is purposefully ignored? In this episode, Emilia sits down with Dr. Travis Chi Wing Lau, a scholar and poet who embraces uncertainty and doubt through his creative praxis, builds queer kinship by thinking through pain relationally, and whose work on recovering historical articulations of pain helps shed light on how we think about pain today.
You can find more of Travis’s work on Travis’s website.
Be sure to follow Travis on Instagram @Travisclau
Episode 2: “The Field Empties Out and That’s Where Things Can Grow”
With Julie Devaney
See season 1, episode 2 transcript and show references (PDF).
Executive Producer: Emilia Nielsen
Producer(s): Emily Blyth and Coco Nielsen
Music by:
@princeshima
How can anyone even begin to address one of the most broken systems of our time, one that seems to be further splintering into irretrievable pieces everyday–that is, the health care system.
In this episode, Emilia sits down with Dr. Julie Devaney, a chronically-ill practitioner and patient advocate who believes in the power of cultivating presence in order to make space for healing, and who turns to fiction writing, in part, to imagine what living with robust health might feel like.
You can find more of Julie’s work on Julie’s website.
Episode 3: Refusing to be Disciplined by our Discipline
With Ela Przybylo
See season 1, episode 3 transcript and show references (PDF).
Executive Producer: Emilia Nielsen
Producer(s): Emily Blyth and Coco Nielsen
Music by:
@princeshima
Have you ever wondered about the connections between chronic pain and menstrual pain? Or how we might be able maintain not only a commitment to, but an erotic sense of interest in our research, writing, and other creative acts? In this episode, Emilia sits down with Dr. Ela Przybylo, a “polydisciplinamorous” scholar who is exploring and expanding ideas of eros through her pursuit of feminist, queer, and sexuality studies alongside her work in asexuality studies and feminist open-access publication.
You can find more of Ela’s work on Ela’s website.
Be sure to follow Feral Feminisms–of which Ela is a founding and managing editor–on Instagram @FeralFeminisms
Meet the On Being Ill Podcast Team
“On Being Ill is an earnest offering to anyone who might resonate with conversations around illness, pain, disability–and why we turn to creativity.”
Coco Nielsen, Producer
“What a distinct joy to be in conversation with such evocative writers and creative people because of this podcast!”
Emilia Nielsen, Executive Producer
“As someone living with chronic illness, On Being Ill has brought me a sense of community that I hope will extend to our listeners.”
Emily Blyth, Producer
This project is funded in part by a 2020-2022 SSHRC Insight Development Grant and a 2024-2027 SSHRC Insight Grant.
Creative Entanglement Collaboratory 