Interview: Oaklee Thiele — Strange Fire Collective

Oaklee Thiele and her medical alert service dog in her New York studio.

Oaklee Thiele is an artist and Disability rights advocate whose work centers on invisible chronic illness and the intimate bond she has formed with her medical alert service dog. Her work has been exhibited in group shows across the United States, Canada, London, and South Korea. Thiele regularly delivers public speeches on the topics of art and Disability to various nonprofits and schools. Her latest article about working as a young Disabled artist was published in Rooted in Rights in October 2020. She currently attends the Cooper Union for the Advancement of Science and Art in New York.

Keavy Handley-Byrne: Oaklee, thank you so much for agreeing to chat with me about your work! I have been following you on Instagram for some time, but for those who may not be familiar with your work, I would like to start off by asking about how your art practice began.

Oaklee Thiele: In 2017, after a series of prolonged traumatic events I was diagnosed with Complex Post-Traumatic Stress Disorder (C-PTSD). Art was a way for me to ground myself during the more intense PTSD episodes where I would oftentimes forget my name or where I was. After several years of my mind being in complete distress, my body also began to decline. I was losing consciousness throughout the day and at times I was unable to walk, talk, or write. Five different doctors told me that these new physical symptoms were a result of the PTSD, that it was “all in my head.” After insisting otherwise and continuously advocating for myself, I attended an appointment at Johns Hopkins where I was diagnosed with Chronic Fatigue Syndrome, Orthostatic Intolerance, Thoracic Outlet Syndrome, and Fibromyalgia.

My work explores this journey to a diagnosis and acceptance of my Disability. I document the ableism I have faced in the medical care system, academia, and the workforce. I also explain my reluctance to use a mobility aid at the young age of 21 and the intimate bond that I have formed with my medical alert service dog, Coco.

Don’t Touch My Medical Equipment, weaving, 15” x 12”, 2020

KHB: You describe yourself as an Artist, a Disability Advocate, and a Service Dog Handler. Could you talk about how these things connect for you? I.e. Is your Advocacy/Activism related to your artwork?

OT: For a long time I tried to keep all of those titles separate. Initially, I didn’t want my art career and advocacy to mix. I also didn’t want to be labeled as a Disabled person. It took me a long time to proudly describe myself as ‘Disabled’ and on some days, I still struggle with it.

Being a Disability advocate was never a goal of mine but I think inevitably all Disabled people become advocates due to this ableist and inaccessible society we currently inhabit.

Once I stopped fighting those things — once I embraced my Disabled identity and allowed it to become a central component of my life, advocacy seamlessly became a part of my art practice.

KHB: To me, your work heavily emphasizes physical gesture. Can you talk about the role of physicality in your work?

OT: I am in excruciating pain 24/7 which has caused me to become hyper aware of my body and it’s limitations. Because of my Disability, it is very taxing to create art. Each line is premeditated and made with distinct purpose. My interest in physical gesture exists not only in my renditions of the figure but also in my ability to create the work itself. Due to my limitations, I often create custom-made tools that allow me to work while remaining in a fixed position. For example, if I am experiencing a flare-up with the chronic physical conditions, it is less painful for me to remain seated in one place vs. walking around in the studio. Oftentimes, I’ll tape charcoal, brushes, or markers to a long wooden rod that I can control from my chair. All of my custom-made tools are created quickly from items around my studio and are deconstructed after each project.

KHB: How did the idea for the collaborative project “My Dearest Friends” come about? What kinds of submissions did you think you might get, and what kinds were surprising to you?

OT: In March of 2020 DisArt, a nonprofit arts and cultural organization based out of Grand Rapids, Michigan, contacted me for an art collaboration addressing the COVID-19 pandemic that was currently unfolding. We were all distraught over the inaccurate ways in which mainstream media were portraying Disabled individuals during the pandemic. Disabled voices were being erased during this historic period. We were labeled as disposable and our healthcare needs were abandoned in the name of triage.

DisArt and I wanted to create a space that could archive the Disability community’s collective experience with the COVID-19 pandemic. During a brainstorming session, I wrote a poem titled, “My Dearest Friends.” This poem begged my Disabled community not to forget the maltreatments we faced during the pandemic and later became the foundation for what is now known as the My Dearest Friends Project. After writing this initial poem, DisArt and I posted it to social media and requested that Disabled individuals respond with personal recounts of life during the pandemic.

Since I’ve never done such a collaborative piece before, I didn’t have any expectations for the kinds of submissions we’d be receiving. The response to this project however; has been, like nothing I’ve ever witnessed before. Since its inception, the Dearest Friends Project has received over 290 submissions from across the United States, Africa, Australia, Europe, and South America. Each submission starts with the words, “My Dearest Friends…” and is followed by candid thoughts and experiences. I find myself deeply connecting to many of the submissions and have even become close friends with some who have submitted on multiple occasions.

If you’d like to learn more about the Dearest Friends Project, visit our Instagram:

This House is Also on Fire (So What’s Even the Point of All of This), acrylic on canvas, 70”x 54”, 2020

KHB: The COVID-19 Pandemic has made evident that different communities have been disproportionately impacted by its effects. In what ways has this pandemic affected your practices as an artist and advocate?

OT: I think I experienced a lot of the same things as other artists/advocates: my teaching contracts were cancelled, exhibitions postponed, and public speaking gigs either moved online or were rescheduled for a later date. It was incredible to watch the arts and Disability communities adapt and survive. Since the start of the pandemic I have performed more public speeches than ever before (all virtually of course). I participated in a solo show at Smallbany Gallery, a tiny gallery created by Katherine Chwazik measuring approximately 24” x 19.” I also currently hold the position of artist-in-residence at the Socially Distant Artist Residency, an online cohort created by Patricia Kalidonis. I truly believe that despite the countless negatives brought on by the pandemic, it has allowed for the arts and Disability communities to connect and work together in ways we never have before.

KHB: Finally — Where do you see the future of your making headed? You have used multiple different mediums in the past — do you see yourself continuing to do so?

OT: I used to have a detailed plan for my life and career and if there’s anything that COVID and my Disability has taught me it’s that the future is unpredictable and nearly impossible to plan for. I have a general idea of what I want to do next. I definitely plan on experimenting with a variety of mediums in the hopes of finding malleable materials that I can work with during flare-ups. Regardless, art and advocacy are now linked for me and I’ll continue to do both for as long as I’m capable.

KHB: Thank you so much for speaking with me about your work. I look forward to seeing what you do next!

OT: Thank you so much for having me! You all are doing such great work here at the Strange Fire Collective!

Originally published at on January 14, 2021.



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Keavy Handley-Byrne

Keavy Handley-Byrne

Keavy Handley-Byrne is a photographic artist, writer, and educator who lives in New York City and works throughout the Northeastern United States.