Claiming Care as Capacity: A Topical Memoir
My history with the work of justice began when I was a child. I was born at the tail-end of the nineties, to a rural-dwelling single woman. I was born with infant asthma that would persist into adulthood. I was born with predispositions to respiratory illnesses that as I grew came true like prophecy. Most importantly, I was born into a family where the experiences colonialism has conditioned us to refer to as disabilities were regarded as characteristics that were simply in need of being accommodated.
I grew up in a lineage of matriarchs that all shared an implicit understanding that the foremost duty of family, if any, is that of meaningful exchanges of care. This was true of both circumstantial mishaps through life itself as well as differing levels of ability, as hindered by illness or another sort of malfeasance. When my mother could not leave one of her several jobs to retrieve me from school, my grandmother, at the house where she was employed, received me warmly. She would feed me, entertain me, and make sure I took a bath, all between her own spinning obligations as a live-in geriatric nurse to a retired pastor in the farewell days of his life.
Reverend Edwards passed towards the end of my adolescence and I have to admit, I don't think of him often. What his memory means to me, however, is much bigger than the absence of his life. It was in his house that I learned the critical lessons that stick with me today. I learned to play the piano by ear on the yellowed ivories that sat lonely in the upstairs sitting room. I learned the prayer of serenity from the wall tapestry I always faced from my preferred seat at the ornate, mahogany dining table. I learned to tell time using the position of the sun from the high seat on the back veranda that looked out over the orchard. And arguably, the most important lesson I learned was just how much care work was gendered and the extent to which disability accommodations function as class markers in an otherwise levelling circumstance.
In my adulthood, I've learned by practice that the prayer of serenity truly does help even without a belief in Christianity. I've also learned, similarly through doing, how essential it is for cross-movement work to exist in the pursuit of holistic justice.
I was diagnosed with autism when I was sixteen years old. This is late by standards of care set by white doctors and parents who have the time, money, and cultural permission to assess why their child is behaving in ways they find confusing. However, by the standards of mental health care available to poor people in the global south, a diagnosis at sixteen looked the same as early intervention. Unfortunately, among poor people in the global south, autism also looks the same as being finicky, standoffish, unnecessarily sensitive, and easily upset. Therefore, it is safe to say that the extractive practices of colonialism did not stop at material resources, but also took from our communities, kind discernment, and organising around extending care.
“The understanding that disability and care work impact people differently based on geopolitics, gender, and class is the most necessary one in any attempt at disability advocacy.”
Through secondary and tertiary education, I received no accommodation for any of my disabilities. I was diagnosed with bipolar disorder during university and an anecdote that effectively sums up the experience of higher education with a psychosocial disability is the singular time I deigned to disclose having a bipolar episode to a teacher that had asked why I seemed to be lacking energy that day. Upon reception of the knowledge that I was bipolar, she quickly replied "Oh, you mustn't joke about that! There are people genuinely living with those conditions!" After I replied to her performative (and ultimately, dismissive) display asserting that I was indeed one of those people, she hurriedly changed course in order to say "Well, it's not that bad. People with those diseases are usually very bright and creative." On a day where I was fighting suicidal ideation to meet an arbitrarily rigid deadline, I was certainly not feeling particularly bright or creative.
Something I have found myself asking for time after time throughout my life, in a way that felt futile, was for everything in educational and professional spaces to be at least slightly less rigid. On multiple occasions, I've found myself expressing that the obligation (whichever it was) was not serious enough to be defended with such carceral responses. This nagging feeling that productive situations do not have to be as unkind or punitive as they had always felt followed me into multiple jobs both during and after university.
I've worked in places where the tasks given to me for completion across eight hours took me ninety minutes out of my morning. Every single time, I was nonetheless required to sit in that corporate office and perform productivity that was ultimately fruitless solely in order to avoid carceral responses to my seemingly lackadaisical attitude. Whenever I would raise this issue to my family or peers, they would urge me to simply get a job I enjoyed. As an autistic person, I enjoy a good deal of the organisational work that takes place in an office. However, I could never quite find the language to explain to them that the hindrance was not the nature of the work itself but rather, the ableist expectations of capitalism that dictates that uniformity (towards a goal of subjugation of the working class) is more important than efficiency.
Upon leaving university and several jobs, I became resolute that I was unable to work in ways that were not task-based or would not allow me to set my own hours. As a poor person in the global south, however, it certainly seemed like time-based work made to quell dissent, and rigid hours were the punishment people like me incurred for making the mistake of not being born into wealth. I would think back to Reverend Edwards whose children, my grandmother's bosses, could outsource the care of their elderly father to someone like a member of my family who didn't have the privilege of finishing high school or the choice to say no to overwork when it came with room and board and groceries. My grandmother, without a doubt, spent a decade doing the work of a team of domestic staff exclusively on her own. This took place through her own experience of ageing and increasing disability.
She understood completely when I moved across the country and responded to solicitations for updates about my well-being by telling her I was not going back to work in an office. She understood less when I told her I did not have a plan but I would rather starve than be subjugated for money. Freelancing only barely kept me fed but it gave me the freedom to finish a week's work in four hours, without having to waste the rest of the week pretending to be productive.
Currently, I'm employed full-time at WE-Change Jamaica. We are a team of ten, and seven of us live with one or more disabilities. At this stage of my adulthood, I am dealing with increasing chronic pain as my body ages and as environmental and nutritional marginalisation through poverty and regional underdevelopment take their toll on my quality of life. My organisation looks at me as well as my co-workers and the community we serve, and sees not extra time taken for work or "special treatment" that needs to be doled out but rather the full spectrum of the human experience in the absence of violent suppression.
At WE-Change, we do our best to care for people disabled by marginalisation through the disabling experience of living through these marginalisations. As a team, we consider every level of capacity, without question. Our yeses mean yes and our nos mean no, no explanation or bargaining required. My coworkers also intimately understand the experience of feeling as though it is only people that are wealthy that can experience accommodations of disability. We disavow the idea that care should be for sale, even while understanding that care work deserves fair and extensive compensation. Here, a major mission of ours is that of increasing access: access to money through mutual aid, access to safe exit strategies from abuse, access to life-saving healthcare through subsidised mammograms and pap smears, and access to the ability to extend care.
“In non-hierarchical experiences of holistic collaboration, "pleasing everybody" looks like empowerment.”
The understanding that disability and care work impact people differently based on geopolitics, gender, and class is the most necessary one in any attempt at disability advocacy. It is through the knowledge that care work falls to people socialised as women that we can understand why care work often goes unpaid. It is through the knowledge that colonialism and capitalism are mass disabling systems of oppression that we can understand why rates of disability are so high in the global south. It is through the knowledge that everybody deserves care and access and material support that we can understand the use of care webs and the reasons why care should not be exclusively for sale. It is through the knowledge that disability is often seen as a personal failing that we can understand the need for people to be seen as valuable regardless of their relationship to productivity.
As we interrogate the role of cross-movement collaboration in creating justice, we also have to investigate our individual roles in the ways we might uphold similarly oppressive structures in our lives and spaces.
As a child, I found myself antsy and impatient by the slow pace at which Father Edwards spoke. In adulthood as an activist, I've come to learn the value of crip time and that speed (and, subsequently, the roots of its so-called value having their origin in capitalist notions of efficiency) is less important than access. As a child, I found myself hesitant to confess to any sort of hindrance or obstacle, thinking that admitting difficulty meant I incurred punishment or ridicule. In adulthood as an activist, I've come to learn that asserting boundaries around our accessibility needs not only helps us support ourselves but lifts up others around us that might have needed the confidence to do the same, if not the exact same accessibility measure. As a child, I remember thinking that it was the responsibility of queer and transgender people in the global south to move somewhere safer and more accommodating. In adulthood as an activist, I've come to learn that homonationalism isn't the answer to the same tune by which I espouse that care should not be for sale. Queer antagonism, ableism, and the weaponising of wealth are all part and parcel of the same barriers that gatekeep the justice we all seek.
The glue and oil holding my organisation together and simultaneously ensuring that we run smoothly is our commitment to the sovereignty of individual needs. At WE-Change, we don't take sovereign to mean alone; we take it to mean worthy of being considered as consequential. The idea that it is impossible to please everybody comes from organisations of power where the onus of pleasing everyone is on the people at the top of the hierarchy. In non-hierarchical experiences of holistic collaboration, "pleasing everybody" looks like empowerment. Access looks like disseminating resources not equal in amount to everyone but equitable in regard to everybody ending up with their unique needs met to the best of the collective's capacity.
It is through this prioritisation of justice over equality that we as activists can ensure effective and fruitful cross-movement work. The answer will not be found in paternalistic applications of half-considered "accommodations" applied across the board. The answer will not be found in having care and consideration sold for profit. Rather, the answer is not the finding but the journey of the search. Justice looks like creating a world in which everyone can participate. Justice looks like having accommodations be an open-ended question. Justice looks like admitting to difficulty which silently reaffirms to the collective that obstacles should not be cause for shame. Justice looks like regarding obligations with kindness, like reminders of deadlines, like changing requirements in order to centre accommodations and inclusion.
Justice looks like giving everyone a microphone for their voice. Justice looks like giving people who would rather not have a voice, a salient task that meets their needs in order to ensure their participation.
Justice looks like having care at the centre, rather than at the end.