I feel literally stuck between a rock and a hard place.
It’s the night of my choir performance and the choir is grouped by sections and lined up in rows in the community centre auditorium. I find myself in the centre of the soprano section: there’s one row in front of me, one row behind, and three of my fellow high-pitched vocalists on either side. Before the performance, a quick rehearsal. Midway through practice, I notice how physically cramped I feel. There’s about six inches of space on either side of me, perhaps a bit more, but with my rocking from side to side, six inches soon feels unbearably restrictive: I can’t execute a full “rock,” my momentum, my rhythm, is off-kilter, and, more than this, I can sense the tense energy around me as the two choristers on either side of me shoot scathing side-eyes in my direction and attempt to position themselves as far away from me as possible.
I feel awful. Less because of how physically and psychically awkward it feels to foreshorten my rocking movements and more because I know I’m annoying the two people beside me with my pendulum-like swaying. To confirm my suspicions, I ask one if I’m bothering her. Her huff-and-puff response: “Well, you know….” I apologized and told her I’d move (the fact that I felt an apology was necessary speaks to my own thought processes and emotional reactivity and not to any objective need for an apology). She said something about there not being any other space for me in the section because I can’t stand at the end of the row (“that’s for the first sopranos”), and I can’t stand in the front because that’s also for the first sopranos. I told her I’d ask the choir director what I should do (note my assumption of responsibility to fix the “problem”). She responded: “No you can’t do that. Just never mind. Forget about it.” I couldn’t “forget about it,” so, when I saw a chance during a short break, I squeezed out of my row and approached the director. She was not interested in listening to me at that moment, so she shook her head at me and motioned me away. Discombobulated, I retreated to the side of the auditorium instead of returning to my place in the row (which is what I imagine the director wanted me to do).
I was in a hard place.
Seeing that I didn’t return to my spot in the choir but was conflictedly “dancing” away from her, the director approached me and asked me what was wrong. I told her I was bothering the people beside me with my rocking and had to move. Her seeming impatience with me evaporated when she heard what the issue was (I told her during my choir audition that I am autistic), and she tried to find a suitable place for me to stand. I found myself becoming increasingly distressed and contemplated giving up and going home. Finally, the director said, “Well, you could stand at the end of the bass section. There’s plenty of space there for you to rock without disturbing anyone.” I clearly did not belong anywhere near this section (my voice sounds something like a mouse on helium), but at least I could participate in the performance, and the presenting issue would be remedied. I moved to my new location, had ample space on each side of me, and happily rocked my way through the concert (I did experience some upset, however, because I was situated directly behind my “old” spot and saw how the space where I had been standing was now occupied by the two women who found me unbearable).
Even if I technically could have stayed put in the soprano section and rocked within the confines of the space available to me, psychologically I couldn’t remain there. I felt like I was causing a problem and had to take care of things. I felt like I had to make things okay. However, the work I did to fix the problem put stress on me, stress on the director, possibly took practice time away from everyone, and just felt yucky. Whether or not I needed to move, and whether or not I invented a problem that required a resolution, this “other kind” of care work I performed, care work where the person with a disability attends to the comfort of the able-bodied, is a legitimate issue and speaks to the need for a reappraisal of the directionality of care, and perhaps also a redefinition of what care work is.
The concept of “care work” assumes a lack of reciprocity—the giver of care (the care worker) is the “able-bodied,” the recipient of care is the “disabled-bodied.” The burden of care is unidirectional, and the meaning of “care” is perhaps implicitly understood. The Government of Canada (2023) defines unpaid care work as “informal caregiving undertaken without monetary compensation, including direct care of… children, older persons, and persons with disabilities” (n.p.). The directionality and substance of care assumed by this definition is unambiguous. Care moves from those with physical and mental capacity to those often without. Simply, those needing care are characterized by their dependence and perhaps even “incompetence” (Stubblefield, 2014, p. 219).
In her creative essay “Care Time,” Stevens (2018) describes care time as “a liminal place that shifts location between crip time and abled time in a complex, unpredictable dance” (n.p.). Where the carer is not fully part of either the disabled community or the abled community, but “straddle(s) both worlds” (n.p.). While some carers might claim partial membership in the two communities because of the intimate entanglements they experience with each, there is no question, even in Stevens’ essay, about who the carer is, about their physiology: they are non-disabled. They are caring from a standpoint of someone who does not personally live in a disabled body. Thus, even they are toeing the line of order: care flows from the abled to the disabled.
I would argue that the boundaries of care work are more flexible than the “giver/receiver” framing of caring indicates. The directionality of care is not so absolute, and the work done in care time is more porous and has a wider and more inclusive spectrum than implied by the “abled = carer/disabled = cared for” binary. Specifically, this binary doesn’t hold space for the ways people with disabilities care for the non-disabled, even if primarily through ensuring they don’t feel bad or bothered—emotional care work.
Another story.
“Please, can I hold your hand?”
My building was undergoing renovations. The balconies were being replaced. Three months of jackhammering, circular sawing, generators, and other tools of the concrete trade. Also, people directly outside my window, in my space. I couldn’t move to a different building, so I had to live through the noise (with my three terrified cats). I am highly sensitive to noise (not all types, but most, and especially loud noise), so it was a nightmarish experience.
One day, I met up with a few neighbors outside. It was a random meeting, they just happened to be there when I was coming home, and I decided to be social. They were chatting about the construction, so, during the conversation, I explained how difficult it was for me to cope with the noise. Everyone in the group who worked from home was saying that they also found the noise challenging, but they just wore ear plugs or left home for a few hours if they needed a break. I’ve known these people for a few years, so I decided to be open with them: I told them that it was a bit different for me because I’m autistic and loud noises and easily leaving home are very difficult for me to deal with. There’s no simple, even if imperfect, solution for me.
One of the women in the group seemed overwrought by my “big reveal.” She said to me, “Oh my G-d, please can I hold your hand?”, looking at me pitifully. What would I have liked to have said is, “Uh, no, thanks, I’m good.” What I did instead: I gave her my hand to hold, fighting back extreme discomfort and a desire to flee because she was in an (inexplicably) emotionally fragile state, and I felt I had to take care of her. I had to make her feel better, possibly because I had caused this problem.
So, I ask you: What should I have done in these situations? Should I have kept rocking, doing what my body needed to do, and let the people on either side of me deal with it (however they chose to deal with it)? Should I have said, “I’m fine?” and quite literally kept my hands to myself? To what degree is it my responsibility as someone with “nonconforming traits” (Serlin, 2020, p. 173) to take others’ needs into account and to make them feel better?
Perhaps I assume the burden of care because I’m female, and hence somehow osmotically trained to be responsible for others’ comfort, even at the expense of my own comfort. Or perhaps, in typical Rhonda fashion, I’m just trying to be normal and do what I imagine is expected in the situation, even if it means not acknowledging, accepting, or honoring my preferences, boundaries, and needs. The most likely reason is that I felt I had caused these situations, so I was responsible for fixing them.
Honestly, I think if I were braver, bolder, I’d go with “I’m fine.” I’m fine to rock in this tight space and I’m fine not to give you my hand.
I’m fine not to take care of you, even if it inconveniences you. Even if you don’t like me because of it.
“I’m fine.”
I just need to figure out how to say it.
Rhonda Cheryl Solomon, MSc., PhD (cand.) at the University of Toronto can be reached at rhonda.solomon@alum.utoronto.ca or (416) 820-9654.
