By Lynx Sainte-Marie

     I still remember how it feels to dash through the hallways of my old college, high-fiving first years and shouting affirmations at my second year peers. Nine hours of lectures ahead, my chest is tight and my breathing worries me. I haven’t 

eaten and I’ve barely slept. But I run anyway, down the corridor and up the stairs. We’re all frantic, taking classes and attending practicums in social service agencies across the city. 

Though self-care is the unofficial byword for the program, most of us – lecturers and administrative staff included – are doing everything but taking care of ourselves. The self-care article that I write for the newspaper during that time is as well-written as it is ableist.

I remember there being so much shame attached to those words for some of us (many of us broke, racialized and crazy). Even now, years and much self-forgiveness later, I can’t help but feel that familiar pang of guilt when I think about how little I cared for my body, exhausted and trekking home in the winter three bus rides later, having spent several hours in classrooms and libraries. I graduated, tender and anxious, as if I had been cooked from the inside. And so profoundly lonely. It was then I decided to take a year off, hoping for some peace of body before I transferred to university. Ten months later, the pain came. I lay in bed for months, scared and swollen. A year passes and I watch as my circle of chosen family members dwindle. Most of them consist of care and community workers with different professional and academic backgrounds. And as hurt as I am, I realize that most of them are unable to hold themselves together, much less negotiate holding space for me.

I think of the capacity I have as a sick and disabled person and how the Medical Industrial Complex describes it as “limited.” But when we are centring disability, our limitations become endless care strategies and possibilities.

One of the most common questions I get from students is how they can get into activism like I did. I usually laugh when I am asked this, though sometimes I don’t. They paint me broadly-stroked pictures of how they would support these people whose stories they’ve mostly only read about in textbooks and scholarly journals. To them, activism means travelling to different cities and engaging in common rituals of “allyship” like awareness campaigns and protests. They didn’t hear the classmate who nervously spoke about their chronic fatigue after my lecture. Just like they don’t see the ways this work is hard on the body; that most of us find ourselves circling around the globe not for the ‘gram, but because of job scarcity. That most of us are disabled and poor and find it impossible to work 9-5s because our bodies would be too hurt, too over-stimulated, too flared, too swollen and/or too tired to co-operate for that long. To them, Activism is a big ticket item. The public gestures, co-signed by co-curricular reports and resumes. I am ashamed to say I was taught and believed similarly.

We are often told as disabled/mad/Deaf/chronically ill people that our bodies are not good enough. You can see this in the horde of us who turn to care professions and community work for solace, in the hopes that our work will be inherently healing. We believe that by supporting our future clients, we will feel less worthless, or by advocating on behalf of this-or-that person, our lives will be seen as indispensable. The long hours are just a small price to pay for the chance of “making a difference.”

 So we shove our bodies into cubicles in the hopes of recognition and praise while continuing to shame those of us too marginalized for the squeeze. All the while, the oppressive systems of our society are embedded in these spaces, feeding on our pain. We breathe their waste; capitalist, ableist soot in our lungs. It chokes us but we carry their shame as our own all the same.

 I’ve spent the last several years presenting, performing, facilitating, lecturing and consulting in spaces all over this colonized land commonly known as Canada. Recently, my focus has been healing justice and disability justice, challenging individuals and organizations to move away from self-care as an absolute rule – which puts the onus of care on the individual – towards a community care practice and politic. Healing justice takes much of its teachings from disability justice: borne of sick and disabled, queer, trans, gender non-conforming, Black, Indigenous, People of Colour communities (BIPOC); prioritizing the bodies, leadership and genius of the most marginalized. Both of these intersectionality-centred frameworks ask questions like, how can we move towards liberation together? Or are we not only giving, but asking our communities for what we need and holding them accountable? Communities that heal together resist better together. And sustainability is key. The imperialist white supremacist capitalist cishetereopatriarchy knows it runs more efficiently when we’re separated, out-numbered and alone.

 What these oppressive systems teach us about the kind of support we should value is poisonous and insidious. It means that people are reluctant to see the everyday, practical things they do as care work. As if, like building muscle, when you’re not wincing from the tearing of tissue, you’re probably not doing it right. Disabled activists who organize online feel the brunt of these ableist narratives everyday, even if our arthritic fingers hurt with every hashtag. BIPOC care and cultural workers, particularly those of us with multiple intersections of oppression, are paid less than our white/white-passing/lighter-skinned peers, and are often asked to work for free or not asked at all. Many of us struggle to take care of ourselves, while those of us with more privilege and resources are taught that the people we should be supporting are out there somewhere. So we volunteer at crisis lines four hours a week while the emotional labour we engage in with loved ones is scarce. We work with disabled youth, yet the struggles of our chronically ill friends go unnoticed. Couple this with all the self-care we should be doing but aren’t because the world needs saving, and it’s no wonder so many of us deal with burnout and compassion fatigue.

 But the ways we can and do take care of ourselves and each other, with whatever we have at our disposal, are valuable. Now when I think about the care I want to cultivate with others, I think of the range of things we are able to do for ourselves with the support of our folks. I think about celebrating our self-determination and striving for interdependency. I think of the time they moved carefully beside me down the street, without questions and accusations, watching me as I cautiously took my first neighbourhood walk in a year. And that crowdfunder he, she and they created on my behalf for the medical device I currently use for my pain. Or when we promised to check in with one another and spoke about boundary-setting as intentional pathways to each other’s hearts. I think of the capacity I have as a sick and disabled person and how the Medical Industrial Complex describes it as “limited.” But when we are centring disability, our limitations become endless care strategies and possibilities. We’re powerful on our own, no doubt, but working together, all of us as multi-issue people with complex bodies, histories, relationships to this land and stories, holding our most marginalized while still getting the care that we need, that is the kind of care I believe will set us free.

 When I ask the class what they think of when I say community care, they say soup kitchens. Soup kitchens and food banks and shelters. I tell them to think more “micro”, to not rely on the buildings around them for support. Offices close. Access needs shift and change, particularly after business hours – especially after 5pm on Sundays (“Besides, the buildings weren’t made for most of us, anyway.”) Who do we consider our communities? What can care in our spaces look like outside of our professions and non-profit agencies? Who is healing our healers and how are we supporting each other’s self-worth? Can our work heal us and what would that healing look like? They speak about their busyness, supervisory hours and learning contract deadlines; barely seeing their families. I think about the ones who haven’t spoken; the ones who might never tell their friends and teachers they are struggling to keep up. The ones who might never see the ableist parts they play in the very systems they are seeking to change; in the relationships with the marginalized people they will leave behind. And I breathe deep.

 Postscript: I owe so much of my current knowledge of disability justice and healing justice to the wisdom and genius of Black, Indigenous, women, femmes and non-binary people of colour I’ve encountered URL and IRL, including but not limited to Spectra Speaks, Esther Armah, adrienne maree brown, Yashna Maya Padamsee, Mia Mingus, Ciel Sainte-Marie, melannie monoceros, Jassie Justice and Danielle Stevens. May our brilliance always light the way through the darkness.

 Lynx Sainte-Marie

Lynx Sainte-Marie

Lynx Sainte-Marie, Afro+Goth Poet, is a multimedium artist, activist, educator of the Jamaican diaspora, with ancestral roots indigenous to Africa and the British Isles. A disabled/chronically ill, non-binary/genderfluid person, they currently reside in what’s commonly known as the Greater Toronto Area, stolen land of the Anishinaabe, Haudenosaunee, Huron-Wendat, Mississaugas of New Credit, Petun and Seneca peoples. They identify within queer and trans, femme, boi, gender non-conforming, crip and spoonie communities, as well as a survivor of abuse and intergenerational trauma.