Above: illustration by Heidi Cho
by Jennie Duguay
“I do this work in service of
It took me fifteen years to ask for help,2 sixteen to submit, mind and body, to the amount of care that illness requires and seventeen to believe, in my heart, at least some of the time, that I deserve the care I receive. There is only one reason it took almost half my life to get here: ableism. Defined very simply, ableism is discrimination against people who are disabled, sick and/or chronically ill.
A few days before my second nervous breakdown of 2014 a friend held me while I cried in my mostly silent gulping way and told me again and again that I needed help; that I couldn’t do it alone anymore; that they would help me organize a care collective3 here on
They had been talking about it for months: the care collective they were part of in Toronto and the self-described queer
1. Mia Mingus, “On Collaboration: Starting with Each Other,” https://leavingevidence.wordpress.com/2012/08/03/on-collaboration-starting-with-each-other/, (August 3, 2012). 2. “Help” and “care” are used interchangeably.
3. Care collective: community organized volunteer based care that supports the care needs of an individual.
4. “Loree’s Care Collective,” https://www.youtube.com/watch?v=i3rX8MAHULk, (January 26, 2016).
Later we wrote up the first draft of a call-out for volunteers and the next day, alone at home, I lost it; screamed at the wall for an hour, pounded it so hard my fists were bruised. Six days later when I stopped shaking my dear friend had already sent the email, flown home and a dear friend of theirs, a casual acquaintance of mine, showed up at my door. I don’t remember what we talked about, how I behaved, or what she did for me. I know that she is still here now, one of my closest friends and someone I can’t imagine my life as it is now, without.
I hit the wall because I didn’t want to need help, because I felt betrayed by my body and I didn’t know how to talk about it. I hit the wall because I was scared and I wanted to be in control. I hit it because I had failed to make myself better, or at the least, to stop myself from getting so sick.
When I agreed to the care collective I wanted to take the burden off my friends and partner (at the time) who were doing so much for me—not because I believed I deserved the care. I worried that I was burning them out and that they would come to resent me. Limiting how much friends cared for me became the focus of the collective—not getting care for myself. At the time I believed any other choice would result in abandonment. Sometimes it does, sometimes it doesn’t. I don’t remember when it officially became “Jennie’s Community Care Collective” or when I started posting volunteer call-outs on Facebook and hearing from people I didn’t even know or when my calendar began to fill up with “care shifts.” What I remember is shame. All that first year I would tidy the house before people came to clean it. I would try to have snacks for people. To be attentive, engaging, to seem ok—at least emotionally—even though I wasn’t. (Sometimes I still do these things.) It was embarrassing: to be so sick, to need so much help, to not be able to do it on my own. But I also remember moments of relief: when my freezer was full and there were clean sheets on my bed and clothes in my closet. I could finally try to manage symptoms instead of aggravating them. And most of all, I could put time, energy and focus into writing which, for me, is the same as healing.
What came up in my writing was an immense grief and sadness: my life and body had been transformed; I had lost my career and hobbies; many of my relationships were struggling; I was homebound and isolated but what devastated me, I see now, was ableism. It had me believing that my worth was relative to my “ableness” and the “productivity” and (so-called) independence that “health” afforded me—it had me questioning if my life was worth living (I continue to struggle with this at times). I’m not exaggerating when I credit the intervention of community based care5 in the form of the Care Collective with my survival. It functions not only to physically support me, but to strengthen me emotionally and spiritually: to validate my experiences, remind me of my inherent worth, and acknowledge all that I do offer—simply, to love and care for me.
5. Community based care: covers all forms of community care, such as meal trains, childcare swaps or care collectives.
Peggy Munson writes that “imagining a care system based on friendship and activist ideals is hard for me though I may wish for it. A radical revision of care is certainly possible, but only if the survival panic of the disabled is truly, deeply felt.”6 I have felt the survival panic of financial and housing crises, of not being able to shower or cook for myself and I have felt the impacts of my panic on those closest to me—a panic of their own, from which some recover, and some do not; ableism or pain, who knows, too much for them. The Care Collective allows me to say, that at least in some ways, my story is a best case scenario: a radical revision of care. But it’s not a common one. It’s much more common for people living with disabilities and/or chronic illnesses—in particular those for whom disability intersects with gender, race, class, immigration or refugee status, addiction and mental illness—to experience harrowing survival panic: isolation and poverty, intimate partner violence and other abuses, while also experiencing the physical, emotional and spiritual impacts of ableism, transmisogyny, racism and other forms of oppression. Patty Berne, co-founder of the Disability Justice movement—itself created and led by trans, gender non-conforming, Black, Indigenous and People of Color—asserts that “…able-bodied supremacy has been formed in relation to intersecting systems of domination and exploitation. We cannot comprehend ableism without grasping its interrelations with heteropatriarchy, white supremacy, colonialism and capitalism…”7 We make these connections because any work towards building community based care suffers when these interrelations go unrecognized and unaddressed.
It has been said many times: doing dishes can be a radical action. Building relationships based on care can be a radical action. Learning (and teaching) how ask, offer and receive care are radical actions. “A radical social re-visioning of care must include the willingness to take radical action,”8 in other words, community can’t transform us and we can’t transform community if care is not politicized. Disabled people need care—reliable, safe, transformative care—right now. Participation in care collectives is one way for people to get “radicalized around care and disability,”9 in the sense that spending time with disabled folks “functions as anti-ableism training.”10 I’ve certainly found this to be true. Previously abstract concepts like “mutuality” and “interdependence” develop embodied meaning with people as they learn, in a sense, to “see through” the myth of independence, the value system assigned to certain labours over others, the ways ableism defines what is “able”/“normal” and what isn’t—all while chopping veggies or cleaning. People have epiphanies: sick and disabled people are everywhere! Anyone can become sick or disabled! We all need care!
Last year I made an agreement with myself: I would accept offers of help that I sensed (and hoped) were offered without pity or obligation or risk of harm and I would do so with grace and, importantly, with pride. I would not apologize for needing help in the first place. I would not apologize for being disabled. This is a radical action, and I fail frequently.
6. Peggy Munson, “Seeking Asylum: On Intimate Partner Violence & Disability,” in The Revolution Starts at Home, ed. Ching-In Chen, Jai Dulani and Leah Lakshmi Piepzna-Samarasinha (Chico: AK Press, 2011), 119.
7. Patty Berne, “Disability Justice-A Working Draft,” , June 10, 2015.
8. Munson, Seeking Asylum: On Intimate Partner Violence & Disability, 133. 9. Loree Erickson quoted by Mary Jean Hande and Muna Mire, ““The Pace we Need to Go”: Creating Care Culture,” Action Speaks Louder, Fall 2013, 10-11, https://issuu.com/opirgtoronto/docs/action_speaks_louder_fall_2013/10
10. Erikson in Hande and Mire, ““The Pace we Need to Go”: Creating Care Culture.”
I fail because ableism11 normalizes feelings of guilt and embarrassment for needing help. It normalizes a belief that asking for help is shameful and weak. That saying no to help is polite. That there is only so much care to go around and that we don’t deserve it.
Repeat after me: I am worthy of care. It’s OK to ask for help. It’s OK to receive help. I have valuable care to offer. Well? How does it feel to say them? You don’t have to believe them but I want you to practice saying them. And you don’t get to excuse yourself by saying “but so-and-so has it so much harder than me,” (which is by the way totally ableist)! I promise you that these are skills that can be learned with practice: asking for help clearly, with respect and thoughtful consideration of our privileges; receiving help with grace and gratitude; offering help that is sincere, help that we can actually follow-up on, help that doesn’t make us sick in turn. If helping me hurts you then it’s not help, it’s harm.
11. This interpretation of ableism is limited as I’m speaking from a North American context as a white person. Across the world, ableism will manifest in similar, contradictory and different ways.
One of the great lessons of disability justice that is foundational to a re-visioning of care is that care is as much for you it is for me. We just need different amounts of care and/or for different things and/or more or less often. It changes. It’s a spectrum—don’t judge the spectrum. My point is: whether or not you are sick or disabled, we are all caught up in this mess and we are all responsible for cleaning it up. Getting involved in community based care can mean changing someone’s life, but they will change yours too. Never forget that.
I’d like to end with some questions: How do we build communities that include people who are homebound? What safety and accountability practices are needed when organizing care collectives? What are the options besides a care collective? How do we promote and build care systems that address the interrelationship between ableism, capitalism and white supremacy? How can men and masculine of centre people get more involved in caring? How can caregivers take care of themselves? How is ableism stopping us from taking radical action?
Jennie Duguay is a queer disabled femme and white settler living on Coast Salish territories in Vancouver, Canada. She has been published in GUTS and is forthcoming in CV2.