Over-sights and Shared Vision: Collective Resistance Against a Disabling Society

ZARAE WHAKAKA DAVIS
COMMISSIONED AND EDITED BY XAN COPPINGER
ARTWORK BY OLIVIA CHIN

Xan Coppinger: “Blindspots are vulnerable and intimate spaces. Inhabited by many, missed by many, erased by many. These places of subjective non-existence also create liberatory and emancipatory invitations—not just towards revealing more perspectives, but to making visible the very finitude, partiality, and subjectivity of each. In a way, graciously owning up to ever more blindspots. The blindspot I wished to invite more exploration in is at the interweavings of ableism and colonialism.

Zarae and I had shared a drink one evening and discussed our experiences between Zarae’s study in genetic counselling and my work and lived-experience of disability advocacy. By exploring their diverse relationality, knowledges, and situatedness, I felt potential to notice things perhaps otherwise missed; and an appreciation for how multiple subjectivities could co-constitute, reimagine, and reproduce together.

So, in a ripple effect, when Léopold approached me, I approached Zarae with an invitation to explore such landscapes interweaving ableism and colonialism. The questions I posed, with encouragement to respond to what felt most magnetic, was around exploring carceral practices of care at the nexus point of reproductive justice. How do practices of care function within and against violent systems of hegemony? How does the question of scale (at the field of vision of the individual, the family, the community, the society) unsettle this? How can we make visible these nexus points at which our bodily reproductions interface with ideological reproductions?”

This piece was written on the unceded lands of the Wurundjeri Woi Wurrung and Bunurong people of the Kulin Nations. I recognize their sovereign leadership, and their ongoing and unbreakable connection to this Country. Concepts discussed here—such as practices of care and community—have been embodied by First Nations people on these lands since the beginning.

The conversation with Xan which sparked this piece followed several years of being taught (but not necessarily learning) about disability, within settler-colonial academic institutions. Seasons spent engaging with these institutions constitute more than just a passive passing of time. It is a deliberate imposition from colonial systems onto our consciousness; strengthening those same systems, within our minds and out in the world. This must be actively resisted through theory and praxis. It is not enough to simply “disagree.”

Reflecting on responding to a question of “blindspots” at a juncture of health, disability, and colonialism; I considered whether the term “blindspot” was itself ableist. A “blindspot,” as something unseen, is not inherently negative. It can be understood as an invitation to greater understanding. However, the way we are using the term here may not be entirely accurate. Rather, we are considering oversights that we could perceive if we challenged ourselves to do so. The pull, for me, to respond to this question was therefore to identify and challenge oversights within my own thinking. This drew me to explore what already exists, in my networks and close by. Who has been engaging in collective practices of care; challenging narratives of disability; and embodying inclusion?

This writing attempts to weave together a critique of the predominant narrative of disability I encountered during recent postgraduate study; alongside conversation with two disabled people who have sought connection, resistance, and care through collective organising. These voices belong to Julia, a takatāpui person with whakapapa to Te Ati Awa iwi, and CB Mako. I use the term “disabled people” in this writing to reflect their preferred terminology.

CB: How the Disabled QBIPOC Collective happened, is that we are four different people of color who have both visible and invisible disabilities. When we all met, we found something in common. It’s a community. Being together, all four of us founding members, we as a collective had a voice. We were stronger. From there, we bargained as a collective. I have invisible disability, and my child has a visible disability. So, we’re quite a pair. So, we can relate to each other.

Julia: The Disability Justice Network started through multiple conversations between disabled people about how there wasn’t a centralized group organising through a Disability Justice lens in so-called “Australia,” that we were aware of. I think we were all inspired by various Disability Justice projects in other countries, namely the US, but knew that work grounded in US systems wouldn’t perfectly translate here. So, we wanted to explore what that might look and feel like… One of the founders of the Disability Justice Network, Vanamali Hermans, prioritized this ethos of doing things sustainably. Not doing things because we desperately need an outcome; but doing them in a way that we can do again. Because this work is never-ending.

Although my research focused on patient experiences of tumour genomic profiling in cancer, the genetics degree I graduated from often discussed disability in the context of reproductive decision-making. This discussion often erroneously manifested as a seemingly unresolvable tension between affirming the worth and lives of disabled people (disability rights) and supporting individual decisions to have or not have children (reproductive rights). Utilizing the language of “reproductive rights” conceals the reality of these decisions: whether to have a child with a health condition or disability, and the societal factors that influence this.

In nations in the imperial core, such as so-called “Australia,” most people who have or try to have children engage in this decision-making to some degree. This typically occurs as routine genetic screening during pregnancy or IVF journeys. Even the (rare) decision to engage in no genetic screening is itself a choice. Due to their private nature, these decisions are infrequently discussed in public. This, too, can lead to oversights in our collective understanding.

Moving beyond rights-based approaches expands the conversation to more generative questions. To affirm reproductive choice, we must consider how families can best be supported in meeting the needs of children they choose to have: a question of reproductive justice. To affirm disabled lives, we must consider how disabled people can best be supported in having their needs met: a question of disability justice. These framings are less in tension with one another, and more in-alignment. Further, we can expand our understanding of what these needs encompass. For example, through a hauora Māori framework, the wellbeing of the community is integral to each person’s wellbeing, on par with having physical and mental-emotional needs met.

There are reasons an individual may choose not to have a child with disability or a health condition. Often, this is framed as protecting that child from suffering. The social model of disability is now ostensibly the predominant paradigm in mainstream academia. However, in my postgraduate experience, the extent to which the potential suffering of the imagined child arises from society was not adequately explored. Additionally, a noticeable lack of consideration was given to those forces which shape the society which is disabling—such as capitalism, individualism, and patriarchy. These forces are introduced, like invasive species, by ongoing processes of colonisation. There is an oversight here, too: that although the world we live in today is disabling, this is not the only world that has ever existed, and it is not the only world possible.

In te ao Māori, a healthy community is one which collectively meets each person’s differing needs, through collaboration of the differing roles best held by each (he waka eke noa). This is reflected in the relatively-new term tākata whaikaha. This can be understood as “people who are capable/strong enough”—or, who have the appropriate abilities and contributions for their own distinct role in community. The First Nations Disability Network publication “Culture is Inclusion” (Dr Scott Avery, 2018) describes parallels to this worldview, and further expands:

Aboriginal [and Torres Strait Islander] health means not just the physical well-being of an individual but refers to the social, emotional and cultural well-being of the whole Community in which each individual is able to achieve their full potential as a human being, thereby bringing about the total well-being of their Community.

Through this, it becomes clear that lived-experience knowledge held by disabled people is invaluable in building and strengthening community. This is core to decolonial praxis.

Julia: One of the original purposes of the Disability Justice Network was the opportunity to have meetings where we could talk about anything that felt necessary to talk about. There was space for members to put forward agenda items and we tried to ensure everyone had a chance to contribute, but also streamlined things to address time-sensitive matters first… Importantly, we had a shared vision and shared praxis, but there was also a lot of guessing, experimenting, and trusting each other.

These frameworks for reciprocity and inclusion stand in stark contrast to unidirectional support from the state. This is, by definition, state-controlled; and in practice, frequently state-gatekept. Concepts such as work requirements for state aid, and moral and demographic requirements for aid (including who is considered “disabled enough” for assistance) first originated in Britain, as part of the Statute of Labourers Bill that simultaneously a) outlawed voluntary humanitarian giving between individual members of the population and b) made this an incarcerable offence. These policies were subsequently violently imposed onto the colony.

CB: Once a colonizer colonizes a country, all they want is the productive people—those who are non-disabled. There is the stigma—it’s in the history and language how disabled people are treated. Colonized history. So, we have to decolonize ourselves. And say, it’s okay to be disabled. And it’s okay to rest. The reason why they don’t like that is because we’re not producing dollars for the colony.

Julia: As part of the Disability Justice Network, one thing we prioritized was the mutual aid fund. We all recognize that the current way of doing things isn’t working and is leaving a lot of people behind. A lot of people are slipping through the cracks. It’s not accessible. So, we’re trying to replace it, or at least supplement it with these other ways of caring for each other.

Creating, re-creating, and continually-evolving practices of care that exist outside the colonial state honors pre-colonial legacies; of ways of caring and being in community. Despite the epistemic injustices wrought by colonization which attempt to eradicate and invisibilize them, these practices regenerate, reform, and persist. Disability Justice therefore has both a contemporary legacy through collective bodies of work from groups such as the original Disability Justice Collective, and an old-as-time legacy across the globe. This collectively generated, still-evolving praxis resolutely refutes the idea that disabled people need healing or “cure”; but it does lay out groundwork for how to heal the disabling society. This healing too is nonlinear.

Julia: I feel like we often put pressure on ourselves to create something that’s perfect from the get-go, and sometimes put pressure on each other to have created something perfect… I think your question was around taking care of myself—how we take care of ourselves while practicing this. For me, a big part of that is allowing myself to make mistakes. The biggest thing that I want from everyone who is thinking within this framework, is to allow room for growth, and to not try to do it perfectly immediately. Because I just don’t think that’s possible. And I don’t think it’s generative… For me, I feel like I need to practice compassion towards myself, practice patience with myself, and try my hardest to replicate that in my relationships with other people, especially other disabled people in this space. So that nobody is left behind.

CB: You mentioned you’ve read Care Work: there is the word “crip-time.” We go very slow. So, when you SMS me, “oh, sorry, I’m being slow,” it flows fine. We love slow. We work in a different timeframe and different timeline. It all depends on who’s well, who has spoons, who has capacity right now—we help each other in other ways. I live for the day, for the next 24 hours, just be in the present. I’m happy my kids are well today. Tomorrow will happen tomorrow, and I just stay in the moment, and be with them.

Through coincidence or synchronicity, the abolition series where I first met Xan was also my first introduction to Disability Justice (during a workshop led by Mia Mingus). This series overall utilised a Transformative Justice framework. Through this lens, changing the macro (systems) requires us to make change at the micro (relationalities). I would also suggest that change is necessary at a nano level: a radical restructuring of our own neural pathways; away from fear, shame, hyper-independence, and scarcity mindsets—including scarcity of community; and towards collective liberation. We may not be able to change the base functioning of our neurological or bodily systems. We can, however, shift the thoughts and practices we use these systems for. This transformation is reciprocal. As global movements evolve, this informs the relationships we connect with and learn through, guiding necessary growth within our minds; with effects rippling out again into the world.

Returning to the theme of “oversights,” it is important to consider angles this writing has not thoroughly explored. This writing references First Nations voices: Dr. Scott Avery (and the collective voices of the First Nations Disability Network), and Vanamali Hermans (of the Disability Justice Network). As knowledge-holders on these lands for 80,000+ years, this discussion would be strengthened by giving greater space to the voices and guidance of First Nations people. Also missing is a deeper, more attentive approach to themes of bodily sovereignty, and agencies of life and death for disabled people. In acknowledging this, the invitation is created to further illuminate these oversights: for these perspectives to be taken from the periphery and made central to our collective vision. ■