In the Stairwell, We Will Die

Artwork. A gold plaque has the following written on it in black text: "This institution has failed to provide disabled individuals with an accessible evacuation plan. In the case of an emergency, this is where my people will die. Please remember us. Please remember me."

During my sophomore year of college, I wrote my will. That year was filled with trauma. I’d noticed a constant ache in my lower back that soon trickled down my legs and into my feet. They started to look like mountains with peaked arches and small toe pebbles that tucked beneath their surface. I skipped many classes so that I could visit neurosurgeons who eventually diagnosed me with a rare, non-fatal neurological condition called Tethered Cord Syndrome.

When my boyfriend learned that I was drafting my will with a lawyer, he panicked, thinking that my disability was the threat. I told him, “I am not afraid that my body will kill me. I am afraid that I will die at the hands of my inaccessible school.”

This fear wasn’t rooted in some anxious fantasy, but in the harsh reality faced by all disabled students. Like many institutions, my art school did not have an accessible fire escape plan. When I asked how I was supposed to carry my service dog, manual wheelchair, and my weak, wobbly legs down the concrete steps, I was told to wait patiently and they would try not to forget me. So, as instructed, I waited and watched as the able-bodied students rushed past me to safety. I spent this time contemplating my own death and the death of the one disabled professor who sat in the stairwell with me.

No one ever came to get us.

Throughout the rest of the school year, this fear was affirmed as I was persistently met with physical, cultural, and social barriers. Sometimes my wheelchair and I would get stuck in the bathroom stall. I’d pray someone would stumble upon the scene to help while also hoping no one found me stuck with my pants down and ankles pinned between the toilet and my wheelchair.

After critiques, where we spent four hours at a time giving constructive criticism about each other’s art, the Disabled and Black students would silently shuffle into my dorm room. We’d independently critique each other’s artworks because our in-class discussions were led by a white, non-disabled faculty member who bluntly said that our artwork celebrating our cultures would not make any sense to people in what they called the “real world.” When the elevator broke down, I was forced to miss classes because the school neglected to put a backup plan in place despite my pleas. As I turned to wheel out of the school, the security guard shouted, “Why don’t you just get up and walk?”

Every student experiences emotional and physical tolls in college: student debt, overbooked schedules, and fast-approaching deadlines. But everyday stress is amplified for the Disabled student who, on top of all that, also experiences hostile inaccessibility, ableism, and a lack of representation. They are expected to ignore their bodies’ needs in order to fulfill the ableist demands of their institution.

Because inaccessibility hindered my daily life, I spent most of my free time begging the administration for equal access. I felt like I was going to war with an opponent who refused to fight fair. Administration made little effort to address the inaccessibility that surged through the walls of the institution, claiming to be restricted by the school’s historic building status or lack of funding.

This forced the responsibility of accessibility and change onto the shoulders of disabled students. There were good professors who would let me leave early when they saw my health declining and others who would remove the chair from the desk before I arrived so that my wheelchair could smoothly slide in. They made the school year bearable but to settle for bearable is no way to thrive.

Occasionally, I’d win a battle like successfully getting a ramp, but it never outweighed the stark reality and overwhelming fear that consumed me: I could die here. Growing up my mother always said that I could endure pain simply by putting mind over matter. When I started to feel the emotional and physical toll of attending an inaccessible institution, I thought that maybe I wasn’t strong enough—in fact, it’s the system that’s broken.

A crucial way to fix our nation’s inaccessible school system is to share our experiences, to refuse to remain silent. We must amplify our stories because our rebellion disrupts the pattern. We must celebrate the rich values of disability art and culture and recognize that inaccessible colleges force out passionate disabled students who bring critical perspectives to an otherwise non-disabled discussion.

We must redefine our approach because the needs of disabled people are not “special,” our needs are human. At the bare minimum, disabled students deserve safe, accessible, and equal access to the education we’re guaranteed by law.

This upcoming school year I have decided to transfer to a new college. I do so begrudgingly, as I won’t be graduating from my dream school. But I try to remind myself that this dream school doesn’t even have a ramp to their stage for my graduation. They never expected me to survive there in the first place.

Oaklee Thiele (she/her) is a disability rights activist, public speaker, and protest artist whose work chronicles life from the disabled perspective and addresses systemic discrimination within academic and artistic institutions. She is the co-founder and head artist for the My Dearest Friends Project, an international art collaboration that archives, illustrates, and amplifies the stories of disabled individuals.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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The Dearest Friends Project: A Global Art Collaboration Centering Disability During COVID-19

A white wall is completely covered in 8” x 10” abstract charcoal drawings. Some of the imagery includes a microscopic view of COVID-19, a pile of hoarded toilet paper, a doctor, a person using forearm crutches, two people hugging, along with various handwritten notes.

The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19. 

My Dearest Friends,
We mustn’t let this be forgotten-
the time the world gained
Perspective on a small portion
of our struggles. We must
make sure that this moment
goes down in history so
that we can build a better world
a more accessible world
a world for everyone
a world for us.

I have extreme fatigue. At its worst, I am unable to walk up the stairs, talk, or write. I have been to five doctors already, seeking treatment only to be told not to worry because, “It’s probably just your C-PTSD,” or, more annoyingly, “Lots of women have fatigue.” Oh really? I can’t walk up the stairs and you’re going to tell me that it’s a side effect of being a woman? I was told I should just live with it, pace myself, and try to stop getting so stressed out about everything. None of this helped me cope. None of this taught me how to be when your body is slowly betraying you.

In March of 2020, I felt the ramifications of COVID-19 as every exhibition, public speaking gig, and doctor appointment was canceled for the foreseeable future. My local clinic was only taking emergency cases. There was no need to see a patient complaining of chronic fatigue if the symptoms would surely be there after the pandemic. Any chance I had of figuring out my condition had disappeared entirely.

It was at this same time that DisArt, a Disability arts and culture organization with a global reputation, reached out asking to collaborate on a project about Disability and the COVID-19 pandemic. DisArt wanted to challenge the mainstream press after the majority of outlets were describing Disabled people as disposable. Not only had our own bodies given up on us but so had many elected officials, healthcare providers, and much of society. Everyone was willing to accept and watch the Disability community die.

Published on Instagram, my first Dearest Friends poem was written for my Disabled community, begging them not to forget the discrimination and ableism we would face during the pandemic. As my health worsens and the pandemic progresses, I continue to write the My Dearest Friends poems. It’s been my way of coping.

My Dearest Friends,
I’ve been asked this a lot lately: What happens after this pandemic? Will our ableist society still care about all of the accommodations once the able-bodied don’t need them? Will our disabled community lose these accommodations? My answer? Not without a fight we won’t.

After posting the first poem, DisArt and I asked for written responses in return. These poems became the foundation of the My Dearest Friends Project, a Disability-led, grassroots, public project that amplifies marginalized voices and documents the Disabled community’s collective experience of the pandemic. We intentionally chose not to publish the last names of individuals or their account handles. This has allowed for a certain level of anonymity that creates a safe environment that allows very real and raw conversations to take place and a community to grow.

My Dearest Friends,
When this is over- and it will be, someday, for some people- how might I face the people who didn’t care? Those who didn’t wear masks? Who ate at restaurants as soon as they reopened, who went to clubs and malls and a million other places? How can I move through the world knowing how many people were willing to let me (and so many others) die? -Samir

Since the inception of the Dearest Friends Project, we have reached a global scale with submissions from across the United States, Africa, Australia, Europe, and South America. Each response is archived on the Dearest Friends Instagram and accompanied by a custom illustration. This has been our way of finding solace in shared experiences, calling out injustices, and uniting our community.

My Dearest Friends,
It’s a dangerous thing
To be Black
To be gay
To be female
To be Disabled
In this country
And yet against all odds
Here I am
Living and Breathing
Scared out of my mind
But living nonetheless

A white female with short brown hair wears an oversized blazer as she leans on her black cane. Beside her is a long wooden desk that is consumed by 8” x 10” charcoal drawings of Disabled individuals. The head of her German Shepherd service dog can be seen tucked away in the lower right corner.
Photo courtesy of the author.

As my condition worsens, I have found great comfort in this project. I am acutely aware of my otherness. I am a college student studying art in New York City. Having taken a few years off of school due to my health, I am a few years older than the rest of my class. I walk with a cane in one hand and my medical alert service dog beside me. I used to count to three before entering a room, bracing myself for the inevitable questions and remarks as to why I use a mobility aid at such a young age. To put it simply, I am embarrassed by my disability and limitations, but I have found community and support within this global collaboration.

Through this project, I have learned the strength that comes from being part of a Disabled community; that despite extreme variations in our conditions there are certain commonalities to the Disabled experience; that silence is a privilege reserved for the able-bodied. If you are disabled, your right to exist freely and unapologetically is not guaranteed. And so, for us, the Disabled, remaining silent is not an option. We have to make our voices heard if we are to survive this pandemic.

If you would like to join us in the creation of the My Dearest Friends Project, here’s how you can participate:

  • Start with “My Dearest Friends…”
  • Write about your experiences with disability and/or COVID-19 (280 characters maximum).
  • Sign your submission with your first name or pseudonym.
  • Email your submission to or mail a letter to DisArt’s P.O. Box: 3467 Grand Rapids, MI 49501 to receive a handwritten response from our team!
  • For those with access needs, video submissions can also be sent to the DisArt email.
  • Follow us! @mydearestfriendsproject

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.