https://www.dukeupress.edu/activist-affordances

This interview was conducted in February 2023.

Nate Tilton: How does activist affordances address the limitations of the social model of disability in terms of environmental disabling effects? As someone who is personally navigating chronic pain, I appreciate your thoughts on how chronic pain changes someone’s daily interaction with their environment?

Arseli Dokumaci: Before addressing your question, I want to first contextualize the concept of the social model within its historical emergence and recognize its achievements in this context. The model first gained traction in the 70s in the UK, followed by the US and later got incorporated into global human rights frameworks. At this historical conjuncture in these geographies, it did the necessary work of politicizing disability, turning it from the sole issue of medicine to an issue of societal organization. This need to be acknowledged since the political consciousness that the model instigated has brought in tangible transformations in disabled people’s lives. However, as with any other concept, the social model has, thanks to the important work of feminist and postcolonial disability studies scholars, proven to be less effective in addressing certain realities than others. And I am hoping shrinkage, with its focus on process and differentiability, can help with those, building on the tradition of feminist transnational disability studies.

Let me begin with chronic pain. When in chronic pain, your world can terribly shrink. The more pain you are in, the more the perimeters of your environment narrow down, at times, even to the confines of your bed. In extreme cases, your bed can become your whole environment to the degree that it affords not only sleeping, resting (or doing nothing!), but also eating, socializing, maybe working and even making art (like Frido Kahlo painting from bed). The action possibilities that would have – in the absence of pain – been normatively offered by different places of the environment (but note that offering is not equally offered for everyone) collapse to the circumferences of your bed. It is precisely such experiences of disability, which don’t necessarily result from a solid barrier, that the social model omits, and that shrinkage can help account for in our disability politics. In so doing, it can allow us to recognize a commonality between, say, how the environment’s affordances collapse to the circumference of one’s bed when in pain, and say, how the environment of a person in a wheelchair shrinks in the absence of ramps, pushbuttons, and lifts.  

Let me also raise the issue of environmental racism to highlight another limitation of the model. As part of the Access in the Making Lab’s “Air, River, Sea, Soil: A History of Exploited Land” online exhibition, I had the honor of getting to know Mohamed Mahdy’s fascinating “Moon Dust” project. In this photodocumentary work, Mohammed traces the everyday life in Wadi El Qamar, a small town in Egypt where a cement factory was built just 10 meters away from people’s houses. This is a town shrinking in its liveability. Dust and dirt are everywhere to the extent that, Mohammed notes, “the houses are covered with dirt every 5 minutes”. You cannot really open your windows. At the same time, the weather is so hot, especially during summer, and people cannot afford ACs as this is a largely impoverished town. Even with the windows shot, dust and dirt still seep in. Air, which affords breathing simultaneously affords the unimpeded mobility of pollutant particles, which settles on your lungs, ears, and eyes. In a cyclic shrinkage, it is not just the perimeters of your navigable environment but also breathe-ability of air, and along with that, your lung capacity that shrink. The damage done to the air becomes inseparable from the damage done to your gradually disabling body, which, in turn, are inseparable from global injustices that put that cement factory in this town, actively generating its conditions of shrinkage.  

Now, we cannot really address any of these complexities with a term that derives its politics from – no matter how strategically – a deliberate separation of the environment from the disabled body. (Recall the social model’s motto: “It is the environment that disables us, not our bodies”.) At these times of planetary shrinkage, where shrinkage is happening at multiple scales (not just at the periphery of a disabled individual), we need less rigid vocabularies, and I am hoping that shrinkage can help with that.

Because shrinkage refers to a process, not to an object or a moment, its referents may change. We can talk of shrinkage even in the absence of a tangible barrier or an impairment. Because shrinkage allows for differentiation across experiences, scales, and paces, it enables us to look for disability in places that we (as disability studies scholars) are not used to seeing it in, and account for those disparate occurrences in our disability politics, regardless of whether they involve an impairment or not, whether they happen to a single person or masses, whether they are experienced by humans or other-than-humans.

In brief, I think of shrinkage as a solidary-building tool – one that can allow us to scale disability across (such as in the case of impairments, species) and up (from the shrunken worlds of a disabled person to those of debilitated populations, and to a shrinking planet).

Nate Tilton: I am neurodiverse and struggle with PTSD, I’m curious how shrinkage affects affordances for people like myself? What role do social and cultural factors play here?

Arseli Dokumaci: Thank you for this question. Actually, I wonder how you would have answered your question!

Other readers have also asked me about the applicability of activist affordances to different kinds of disabilities, especially mental disability. I tend to think of this way: every book having its own project and its own story to tell. In my book, I focused on particular kinds of disability. How shrinkage or activist affordances might look like in the context of, for example, neurodivergence or PTSD could be the project of another book and I eagerly look forward to learning from them.

After finishing Activist Affordances, I’ve done fieldwork in a psychiatry ward in Turkey, based on that brief ethnographic encounter; what I’ve read in the field, and on my own experiences with obsessive compulsive disorder, I would think that social norms, the pressures to properly perform societal scripts, as you point out, would shrink one’s environment. So does institutionalization, where confinement functions as the ultimate shrinkage. It is also worth noting that, in some cases, shrinkage might result from (sensory or cognitive) overload, leading to, for example, a fear of stepping outside one’s home, or a need for a sensorily shrunken space, such as a quiet room. My hunch is that in such cases, activist affordances may take the form of people as affordances. When a disabled person is unable to improvise activist affordances on their own, then other people around, like kins, caretakers, neighbors, and so on, might take over the creation of activist affordances on their behalf (or fail to do so).

Again, these are just some thoughts that need much more work. The question of how shrinkage and activist affordances might materialize differently (if at all), depending on the kinds of impairment, who is experiencing them, under which conditions and where, is a question for future projects (maybe yours) to explore.

Nate Tilton: Thank you, I feel your exploration of shrinkage and activist affordances opens up new avenues for understanding complex realities faced by dynamic disabilities such as neurodivergence and PTSD. It invites us to consider how environmental adaptations and communal supports can mitigate the disabling effects of societal and structural barriers.

Arseli Dokumaci: Thank you, Nate, for sharing your thoughtful reflections, which are really helpful in terms of expanding my understandings of who or what might count as an affordance for whom. The question you raise about our animal companions is especially important. I’d surely agree with you that our animal friends can become our affordances in a way that we might become theirs. Like a mutually choreographed dance of negotiating daily environments that might shrink and expand differently for each of us. Thinking together with you, I also wonder about my plants.

Nate Tilton: As someone who has a keen interest in the intersection of disability, environmental sustainability, and performance how do you see activist affordances advancing this discourse?

Arseli Dokumaci: I wish activist affordances to make two interventions in this discourse. The first one has to do with shrinkage, and its centrality to emergence of activist affordances. Shrinkage, in a certain sense, is a precondition for the making of activist affordances. In situations where the affordances of the environment don’t necessarily contract and are just there for its inhabitants to “take advantage of” (this is James Gibson’s wording), then there is no need for them to come up with activist affordances. Of course, they may still create affordances; hack existing uses of things; innovate DIY solutions and so on. But I would be cautious to call them as “activist affordances”, precisely because it is for a political reason that I want to think of “activist affordances” as something separate from these, and all other affordances.

Activist affordances are activist in the sense that their creation strictly emerges under the conditions of constraints, scarcity, and losses that I broadly conceptualize as “shrinkage”. By shrinkage, I mean the shrinking of bodily and environmental spoons or both. When your everyday world shrinks, you experience contractions, and in extreme cases, complete deprivation, or denial of affordances. This shrinkage necessitates making do with less, and at times, with none. 

This is exactly where performance comes in, and along with that, the second intervention that I wish to make into the debates around the crossovers of disability and the ecological crisis. Because in performance, you create in and through your body. What differentiates the world-making involved in performance from all other forms of world-making is that in performance, you make up other possible worlds in and through your body, and whatever happens to be in its vicinity. Think of dancers on stage. (Of course, their bodies are supported by the stage and other materials around, including each other’s bodies. My point is not that performance happens in a vacuum, rather that it asks for less, which is what makes it apropos to shrinkage.) Think of this: while, say, a sculptor carves out an object with marble and chisel, dancers carve out the contours of an imagined world in and through their bodies and whatever happens to be in their surroundings. Again, this is not to claim that one form of making is morally preferrable than the other. Instead, it is meant to expand our current conceptions of world-making, especially to situations of precarity, where we might not necessarily have access to stuff to make things with.

The concept of activist affordances is meant to pluralize our vocabularies of disability creativity and allow us to name and recognize the kinds of world-making that can still take place even under extreme conditions of shrinkage. Because all that the creation of activist affordances asks for is our bodies and imagination, we may still improvise the affordances that we imagine, even when all other ways to make worlds becomes inaccessible. Meaning, even when everything else is taken away from you, you will still have your body and imagination, and as long as you have the two (or if not, then have someone else who does, as in “people as affordances”), you may still try to find some sort of comfort in an activist affordance – no matter how momentary, tiny, imperfect and immaterial that affordance may be. Even if it may just be an imagined affordance that keeps you going nonetheless…

What I wish to emphasize here is the humility inherent in activist affordances and their particular kind of world-making. Because it is precisely this humility and their capacity to be created even in the most limiting of circumstances, with the fewest bodily and environmental spoons, that makes activist affordances particularly relevant to our era of ecological crisis. In our times of planetary shrinkage, it is clear that the entire planet is spooning out! And if we can take shrinkage from the level of the disabled bodies to that of the planet, we may as well take some lessons from what disabled bodies have all along been doing within that shrinkage. That is, improvising activist affordances with the least of spoons left. 

Here I want to shift the focus to Gaza. Before I do so, let me emphasize that this shift is in no way meant to be an indulgence in academic theorizing, especially when people’s lives are at stake. I do it because I cannot talk about disability, shrinkage, access and affordances without talking about what is happening in Gaza and more broadly, occupied Palestine. 

It has been for months now that the Israeli state has been committing genocide in Gaza, making death and debility at a mass scale with total impunity. The Israeli military has erased entire livelihoods out of existence; destroyed buildings, targeted, and blown-up life-sustaining infrastructures, and reduced entire places to rubble. Through systematic assaults, Gaza’s whole range of affordances – built or otherwise – has been wiped out, including breathable air, drinkable water, desalination facilities, aquifers, olive trees and other indigenous flora, food resources, roads, sewage systems, electricity, and others. As it has been the case throughout history, settler colonialism is once again aiming to de-furnish the Land of all its existing set of affordances and relations, and make it shrink to the point of utter uninhabitability. And yet amid this unimaginable scale of violence, where the land is stripped of almost all its offerings, people of Gaza have been trying to survive by making up affordances with whatever is left at hand, which, at times are literally their bodies, already so worn-out and depleted. They are making up shelters out of scrapes; conducting medical procedures with whatever is around (be it cell phone flashlights or vinegar); and carrying one another and becoming the affordances of each other’s missing body parts and kins. Even when they are left with nothing but their exhausted bodies and imagination, people of Gaza try to create affordances for one another with just those – no matter how painful, risky, and dehumanizing the conditions are. When I look at these incredible struggles for survival, I see hope and I want to recognize and hold onto that hope. 

Even in the face of utter destruction where everything else is violently taken away, the capacity to imagine persists and refuses to go away. You may destroy all those that were given a material existence. But you cannot capture, steal, tear, or eradicate what is born of free of material conditions. You cannot make dreams shrink. I wish to honor the staying power of imagination (which may be a poem) and how it resists being stripped away even when everything else might be. 

Nate Tilton: Could you explore how planetary shrinkage is portrayed in disability stories, particularly in the context of large-scale disasters and events such as COVID-19?

Arseli Dokumaci:  In the context of COVID-19, marked by confinements and lockdowns, shrinkage is rather obvious. In fact, when the outbreak occurred, some people referred to COVID-19 as mass disablement. However, I see it more as a process of shrinkage. With the pandemic, what disabled people have long been experiencing – the shrinking of liveable worlds – has scaled up to the level of populations, albeit unevenly. Shrinkage allows us to grasp this scaling up (from the micro level of the disabled body to the level of masses) while cautioning us against jumping scales and losing touch with the unevenness of the ground over which any crisis unfolds. Surely with the pandemic, shrinkage became the problem of larger populations, but at the same time, people’s lives differently shrunk, depending on where they are located globally, and what privileges they hold or lack in terms of class, able-bodiedness, citizen status.

Consider, for example how the peripheries of some people’s daily environments contracted compared to pre-pandemic times, while those of others, such as front-line workers, were negatively expanded and stretched. Delivery drivers had to cover longer distances, grocery workers and healthcare personnel had to work around the clock to the point of being stretched thin.

On the other end of the spectrum, the livelihood of those already living in precarity, such as elderly people in care homes, or disabled and chronically ill people whose survival dependent on daily vital care, got shrunk further at an accelerated pace. In devastating cases, this acceleration led to the extent of death, due to deliberate government neglect, eugenicist triaging protocols and other forms of structural violence.

On a global level, vaccine apartheid highlighted the historically shrunken confines of the global South when it comes to accessing lifesaving and life-sustaining affordances of biomedicine.

All these (and other) differentials remind us that any crisis never occurs in a vacuum. Instead, they unfold in an already rugged field where some livelihoods will shrink more rapidly, extensively, and intensely than others. Unlike the linear crisis narrative, which assumes crises and disasters to be disruptions in an otherwise smooth world order that suddenly toppled and disrupted “us all,” the concept of shrinkage can allow for differentiation in pace, extent and intensity.

Consider coastal shrinkage, and take the cases of low-lying coastal cities in Netharlands and Banjul in Nambia, which is literally sinking. Clearly, shrinkage varies in pace, breadth, magnitude and preventability, depending on who/what/where your reference point is and what its histories are.

Crucially, because shrinkage is a process that is always already ongoing, it lacks the distinct beginning and end points that disasters are supposed to have according to linear crisis narratives. Even if the pandemic may no longer be causing the mass disablements that it once did, COVID-19 – from a shrinkage perspective – is not and will not be over as long as the everyday living parameters of chronically ill, disabled, elderly and vaccine-deprived people continue to contract.