COVID-19 has been a mass disabling event. The disruption of societal routines meant that many people who never before had to worry about overcoming obstacles to accessing their social environment suddenly had to negotiate and advocate for their needs to be met. Shifts around the value and the location of work have taken place, as many in our sector have worked from home and have had to navigate the collapse of private and public space, or had to navigate new concerns for the safety of themselves and their loved ones while working in public. Many of us have had to provide childcare and homeschooling while navigating jobs, mental health, physical illness, grief and loss. In this milieu, many arts organizations have begun considering accessibility in new ways. They’ve made commitments to their Disabled audiences, whether that be to provide digital programming accessible from people’s homes or to do an accessibility audit at their place of work. 

Tangled Art + Disability has participated in these conversations with hope that these shifting realities will lead to a more accessible, thoughtful, healthy, and equitable arts ecology. Yet, we continue to see a claw-back of accessibility features such as hybrid digital events in favour of racing toward a post-pandemic “new normal.” However, there are still many, especially Disabled people, who do not have the privilege of pretending the pandemic is over.

This piece was co-written by Tangled staff and community members, drawing on our personal and professional knowledge of being Disabled people working in the arts both before and during the pandemic. We know that the labour to make accessibility happen is often invisible until you need it yourself. This essay is an attempt to make clear our efforts to cultivate, and, as writer and disability activist Mia Mingus coined, “access intimacy” for ourselves and for our community. 

We hope that this piece might be not only be an inspiration to others who are trying to create accessible spaces, but a call to action. We offer our thoughts to provide insight into what it’s like to be in an arts ecology where the work gets done, but the way we get there is often unexpected. A space where Disabled workers are supported, and audiences are engaged, and our responsibilities to ourselves, our artists and our communities are met and surpassed. A place where access is not an afterthought or an obligation, but something that is embraced, pushed to its full potential, and chosen as an act of love.

 Tangled Art + Disability dreams of…

….MORE STORIES OF DISABILITY

“I’m sitting in the dining room, typing this on a pink MacBook. My name is Sean, I use he/they pronouns, I’m an East-Asian Chinese person, and I am visibly disabled: my back curves and my shoulders are uneven. I have black hair, light skin and wear steampunk glasses that are green with gold rims that float on the frames. I’m wearing a black t-shirt and am sitting cross-legged on a wooden dining room chair.”

Since the pandemic began, many disabled people have provided similar self-descriptions when coming together on Zoom or other digital platforms. We do this as a way of disrupting the assumptions of who is present and welcome, since self-description is just one of a host of access strategies created by disabled people to hack the insufficient accessibility of virtual spaces. These protocols play a distinct role in our work to establish new ways of configuring the social world we live in—a world that desires disability  instead of trying to eliminate it.  

When disability is reframed as something cultural, then we are actually participating in this phenomenon together—we are using access practices like the self description culturally to establish new ways of being together. They are vital practices that suggest a different way for disability to manifest: we imagine a new crip horizon where access and disability thrive.

This horizon suggests a future of possibilities: interdependence, access intimacy, rest, and care. At Tangled Art + Disability—Canada’s first arts organization composed entirely of disability-identified staff—we want to explore the messy, nuanced and organic ways we can configure disability as a difference that matters. Drawing from our lived experience, the following excerpts tell stories that propose and give language to a different future, an expression of communal knowledge and the generative friction we might find at the horizon. 

Sean Lee (he/they) is the Tangled Art + Disability Director of Programming, and is an artist and curator exploring the notion of disability art and accessibility as the last avant-garde. 

…MORE COMMUNITY CARE       

Here’s how I’ll know the art world has reached my Mad horizon:                  

There are many of us here. We made it through art school. We had funded mental health centres with no waitlists and no stigma, professors and mentors who shared their own symptoms and diagnoses with us, and fair and available accommodations to help us here. Or we didn’t go to school, and we learned in other ways. We have always used art as a tool for resistance, a natural extension of the self, a language to connect with each other—of course we are here.

As artists, we cannot separate our work from our Madness, the ways we move through the world, the ways we need care. We are valued as full beings by the institutions that show us, fund us, and profit off of our labour. These institutions recognize their responsibility to care for us as they profit off of us. Our Mad wisdom is respected, honoured and used to make the sector stronger and healthier for everyone. 

Abandoned are the empty calls toward the individual responsibility of self-care. Instead there is an abundance of community care. Peer crisis intervention teams replace cops. We know each other’s names, needs and stories. We dictate what care we do and do not want. We are not afraid of receiving community care. No one gets fired for being symptomatic at work (or needing to not be at work). 

In the future I imagine, art openings have plain language explanations of the art, relaxed hours where we are allowed to yell, to touch things, to find each other, both spatially and spiritually. There is food. People who have never been to an art gallery are here. We bring our babies, our elders, our friends—all of our friends. 

I weep before a beautiful painting. A docent gives me a chair to sit in, a glass of water, a tissue, maybe they even weep with me. We have a shared experience. How can one be asked to experience the sublime, but silently, motionlessly? 

Mad Horizons proliferate. What shines in yours?

Francis Tomkins (they/them) is the Tangled  Art + Disability Communications Coordinator. They live and work in Toronto. 

… TRUST IN EACH OTHER

“Accessibility Betrayal”

I strolled to many places; bought drinks, snacks, and books
Demons giggled; I was tempted
They didn’t care about my future
They wanted into our pockets, nothing else

Greed kept piling

Time ticked 

People were falling down from the society
I dropped some money in invisible people’s paper cups
They suffered  through the quiet night. Lonely.
Frozen to death by unforgiving winter

Time ticked

Every day, my heart heaved with so much pain
I too felt lonely

Time ticked

Tsunami of slimy germies claimed lives in a blink
All of us ran to our shelters for safety
I watched the news anxiously
Millions of lives disappeared, so quickly

Time ticked

My life shrunk 

It became quiet

As I floated on the isolated lake

No world disturbed me

Time ticked

George Floyd was kneed to death
The world cried out for Black Lives
Got a video call from the Black interpreter
My peace trembled then crumbled
… My own trusted interpreter was one of racist ideology…
No, no, noooo

Time ticked slowly

Everything fell apart; I saw the naked truth
My dear friend tried to twist my arm to do what I did not want to
I fought with her for one year
Punished me, shrugged off at my pains 

She shooed Deaf folks, isolated me
 

Time ticked fastly 

I felt there was no room in my space
I wiggled through the crowd
CAN’T TAKE IT ANYMORE!!!
I threw a lot of stuff out of the window
GOOD-BYE

Sigh

Time ticked

I felt the air flow in and out in my space
I felt calm
Wait a minute, why didn’t I think about my future before?
Now I don’t spend much anymore 

Tamyka Bullen (she/her) is a Deaf artist, performer and social justice advocate and the Tangled Art + Disability resident ASL teacher.

…CRIPS IN ALL KINDS OF SPACES 

Quantum flux is the phenomenon of a temporary change in the amount of energy in a point in space. How do you succinctly explore the idea that the spaces we physically inhabit exist in a state of quantum flux? Not literally—this might be obvious—but through their contradictions and their ability to hold different meaning and effects depending on who you are and of your current circumstances. Some examples would be the way in which the energy in our homes may change when hosting a dinner party with friends, or how your bedroom changes when grieving the loss of a loved one.

Disabled people have always had complex relationships with the spaces we move through. But now? Crip concerns with spaces have become amplified because our perceptions and relationships with private and public spaces have radically shifted in the last few years.

What are these contradictions though? When talking about access we know that what works for one person doesn’t work for another. Like how ASL interpretation benefits the Deaf community but is not accessible to the Blind community—which feels simple—but usually, for non-crip folk, it’s there too, just quieter, in the background. Like how one worker may work more productively with music playing, while another worker gets easily distracted by music. The pandemic has exacerbated this because our private spaces are now publicly displayed through Zoom meetings, adding an additional type of fatigue to work.. Yet this technology has eliminated the need to commute for many, which has allocated some energy back to ourselves. Social anxieties are soothed by social distancing, and the shift others have made to ordering groceries and necessities for home delivery gives those of us working from home back even more time.

These changes are complex, uncomfortable and exhausting, but they also come with perks. How do we navigate these rapid adjustments while preparing for changes to come when the world tries to return to “normal” yet again? 

We, arts workers and organizations, can make a commitment to maintain what has helped us through this pandemic and change what has been draining us. The answers require time and conversation, but we hope that we can begin a dialogue with this prompt: The space we currently inhabit is in a state of quantum flux, so what would you have your space do to help you?

Yousef Kadoura (he/him) is a Lebanese-Canadian actor, writer and amputee. He has worn many hats for Tangled over the past four years.

Victoria Anne Warner (she/her) is the Tangled Art + Disability Research Coordinator. She doesn’t like describing herself.

…MORE COZY WORKING CONDITIONS 

I experience so much less anxiety when I am in crip spaces. I am most comfortable when I know I am not the only one who might work in ‘crip time,’ I don’t have to perform ableist and sexist modes of professionalism to be taken seriously in my role. In a typical workplace, it would be frowned upon to show up in soft pants, or to sit on the floor in the middle of the workday. It feels out of touch to pretend that we can work “like normal” in these times, so to have the privilege of controlling most of my physical and sensory environment—to not have to explain the need to turn off my camera on Zoom, to work from bed, to not always work from 9-5, and to be covered in microwavable heat packs during meetings—allows me to function in the way I need to be able to function.

My interdependent crip working relationships have sustained me throughout the pandemic. Whether it’s friends and coworkers asking each other if we’ve eaten yet today, or if we’ve been outside, or if we’ve figured out how to be more comfortable, I quite literally could not do anything without them. This is access intimacy in action. I know that we don’t need to be physically together to produce incredible art, but we do need to know each other’s access needs, which are a love language all their own.

Everyone has access needs, disabled people are just brave enough to articulate ours. During the pandemic, I started posting pictures of myself working from home with the hashtag #SoftOffice to Instagram, in an attempt to illustrate how I was making myself more comfortable and to invite others to question and share how they might do the same. The response has been heartening: people have excitingly messaged me new access supports they’ve gotten for themselves, and sent me photos in return when they encounter softer work spaces in the wild. It’s tricky to track #SoftOffice’s influence outside my own little corner of the internet, because the hashtag is largely occupied not by those with accessibility in mind, but rather by images of a decidedly ‘feminine’ work aesthetic (think white women “girlboss” energy), or sponsored content from influencers trying to sell planners or knitwear. I’m more interested in using it politically, as a way to encourage people to think about how they might make their work life more accessible, and to think critically about how we view ‘professionalism.’ Of course there are layers of privilege involved in who might be safe in their work to take a meeting lying down, but it is my hope that a post-COVID world—whatever that means—is more expansive in its perception of how we can work, and not having to be sitting at a desk to perform abled notions of productivity. Instagram stories are where I go to share professional resources, and “close friends” is where I go to commiserate about how I’m actually doing. It’s hard enough to have a body—why not surround yourself with softness?

Kayla Besse (she/her) is the former Public Education Coordinator at Tangled Art + Disability.

…. CRIP JOY AS RESISTANCE

Photographs have the capacity to still time. They can also affirm their creator, signposts of sorts that claim, “I was here.” Within the context of the pandemic, the act of taking a photograph is a soothing one for me, a way of externalizing emotions around the contexts of claustrophobia, fear and mental illness. I am someone who needs to move. Exercise has been my medicine for years, and the gym was my safe space. I would withdraw, zone out, or run on the treadmill until I was too tired to be overwhelmed; it was how I dealt with sensory overload. But today, the solitude I crave is limited by my living space: I feel trapped and caged. By documenting aspects of my environment, particularly light through objects within the context of the social spaces I inhabit, I explore the concept of imprisonment. I illustrate how ideas of comfort clash with the idea of being trapped or smothered. During the pandemic, comfort can become claustrophobic. I seek refuge from the concept of refuge itself, which creates a psychological discomfort and tension that I am constantly grappling with.

The following exchange and conversation surrounding photographs, created by Heidi and myself, relates to the idea of “spoons” or energy around ideas of mental illness and “high functioning.” Spoon theory is a term coined by Christine Miserandino, and was developed as a way of explaining to her loved ones what it was like living with chronic illness, where a spoon represents a finite unit of energy that, once depleted for the day, cannot be regained.

The photographs I have taken are of areas which may have been comforting for me at one point, but have since become places of emotional isolation and shutdown. The psychological tension I experience between comfort and claustrophobia is one that I hope to convey through the act of taking photographs.

Max Ferguson (he/him) is an interdisciplinary artist, and is the Tangled Art + Disability Curator in Residence. 

…MORE TIME, MORE PATIENCE, AND TO HOLD SPACE

Interdependency within artistic creation is something I have been trying to implement within my own artistic practice. Collaboration in forms of open source software and communicative technologies have allowed me to work with other artists from different countries. These technologies are not new, they have been adapted and hacked as accommodations for the disability community, allowing artists and patrons with “no spoons” to bypass the arduous trek to physical spaces.

There has been a mass demand for accommodations since the pandemic. As a result, virtual gathering spaces have become a pillar of how we work and connect. I am hopeful that this virtual space will prompt continual empathy for our humanness, for the Zoom fatigue you are experiencing now will be a reminder for the future and a driving force of empathy and consideration for accommodations when an artist, culture worker or patron asks for “more time, more patience and safe space.

These visual representations are reminders for myself and Max of our collective fatigue, our experience as disabled artists and culture workers and the energy we may have lost and gained within our homes.

Heidi Persaud (she/her) is a multidisciplinary artist and the Tangled Art + Disability Gallery Manager. She has way too many animal friends. 

… NO ASSUMPTIONS

I’m the person who can stop a party, the one who says the awkward thing, shares just a bit too much, makes a dark joke or drops the F-bomb inappropriately. My ex loves it.*  I know how I should act… I just don’t want to. Because it’s funny.

My humour is often misunderstood, at least in non-Crip spaces. 

Suffering is not funny, but discomfort absolutely is. It amuses me to be a little unsettling, possibly dangerous. It’s not hypocritical, I enjoy being uncomfortable myself. I love being challenged, and being humbled.

I grew up with death and despair. The gift of that is that it made clear what *truly* matters, which is so often galaxies away from our daily preoccupations. So much of what consumes us on a daily basis is very silly. I am entertained by how seriously we take things, so often. Our ridiculousness as we attempt to bridge the gaping chasm between the fleshy fragility of our bodies and mind and the grandiosity of our self-importance.  

My humour is a path out of darkness. It is sometimes macabre, but never cruel. If I make jokes about pain, I’m not saying pain itself is funny. I am saying that I am bursting with joy that I have moved through it and furthermore, that I will not let it define me in perpetuity. 

It’s funny that people seem to be upset that I’m not more traumatized by my trauma. But my past fills me with delight in the beauty of living, right now. My weirdness is a personal rebellion against misled assumptions.

So, on my crip horizon? There’s a lot more humility. Everyone is always a little bit uncomfortable. And it is fucking hilarious.

Cyn Rozeboom (she/they) is the Tangled Art + Disability Executive Director and has more pictures of her cat on her phone than her children. 

… MORE TALK ABOUT THE *PROCESS* 

Kelly Fritsch once said to ‘crip’ is to “open with desire for the ways that disability disrupts.” So what is it like to crip the process of co-writing a piece like this together as a staff? Let me explain:  

We knew we could create something, but only if we did it together. Only if we were interdependent. The creation of this piece began like all things since March 2020, over Zoom and with a heightened level of exhaustion. We pushed off of each other by sharing our emotions, confusions and inspirations. 

We moved away from the computer screens taking time to think on our own. We asked ourselves questions like: 

“What do I want to create?” 

“What support do I want throughout this process?” 

“What support do I desire to give throughout this process?” 

“What do I dream of?” 

When we returned to each other we shared ideas, placed our words, photos, inspirations, offerings, and desires, but this time beside one another. Each idea, in whatever phase of its process, was welcomed, encouraged and included. As disabled folks, we knew all too well the experience of exclusion and what we aimed to create was a feeling of inclusion. 

Through an insistence on interdependence, support and a shared desire for disruption, our work came together naturally. In our return to each other, we created a space to return to ourselves. 

This is the space, the one in which we feel included, where we can dream, where we move towards a crip horizon. 

The crip horizon is where our stories are told, where our communities are cared for, where our spaces meet our needs. We move towards a horizon that is cozy, that is joyful, that holds space for us. Towards a horizon of abundance, discomfort, and humour. 

Wee go unfinished, messy, desired. We go welcomed, encouraged, and included.

We go towards, and we go together. 

Kristina McMullin (she/her)  is Tangled Art + Disability’s former Communications Manager and current biggest fan. She’s currently texting her former colleagues telling them how much she misses staff meetings.

Feature Image: Untitled, 2022 by Heidi Persaud. Technical Lead: Terry Anastasiadis.

Image description: A photograph of a living room. The room is filled with hundreds of spoons that are seemingly falling from the ceiling, or exploding upwards from a pile on the floor. The room is dimly lit. The only light comes from the large picture window, which shows a snowy outdoor scene.