Online Symposium in Toronto 2025

Aparna Raghu Menon (she/her)
Title: Examining the frames of reliability and productivity in non-verbal autism: A critical disability studies approach

Bio
Aparna Raghu Menon is a PhD Candidate in Public Health Sciences at the University of Toronto. Her SSHRC-funded doctoral project draws on critical disability studies, communication studies, posthumanism, and feminist frameworks to investigate the intersections of autism, health, and communication among nonverbal autistic children and adolescents. 

Abstract
In this presentation, I question the notion that autistic communication is fulfilled only by a successful completion of the communicative act and show how communicative possibilities exist simultaneously within the risks of failure-laden communication or even within a silent refusal to communicate. To do this, I draw on Titchkosky’s and Michalko’s ideas of how disability-framed-as-problem reproduces endless renderings of the problem of disability while leaving the frames completely unexamined (2012). 

Examining the frames of reliability and productivity in non-verbal autistic communication: A Critical Disability Studies approach 

As a PhD student located in Public Health, as a mother to a 7-year-old son diagnosed with non-verbal autism, Down syndrome and multiple other diagnoses, as a tutor to autistic adolescents and as a parent counsellor, I am really not a stranger to what has been referred to as the autism industrial complex (Broderick & Roscigno, 2021; McGuire, 2016). Within this dominant complex, autistic non-verbal communication is often construed as faulty. The labels usually applied are unreliable and unproductive. Medicine, rehabilitative services and public health put forward solutions in the shape of ‘evidence-based’ interventions that typically fall under the umbrella of what is known as therapeutic Speech and Language Pathology (I will refrain from making the obvious point about the implications of using the term ‘pathology’ here). One such intervention is known as the Picture Exchange Communication System, or PECS,which is widely used in North America by children and adults with non-verbal autism to make communicative requests. Systems such as PECS are said to increase the ‘reliability’ and ‘productivity’ of communication. PECS is taken for granted as a communication tool for teaching respondents, typically non-verbal children or adults, to make requests to a communicative partner, who is usually verbal and normally a parent, a teacher or a therapist, by exchanging symbols printed on cards for desired items (e.g. food, drinks, toys). The communication request is deemed fulfilled if the “correct” picture card is presented to a communication partner who asks questions or provides 'prompts.'  

But let us step back for a minute here to reconsider the first label –reliability. Autistic non-verbal communication is constructed as unreliable and, therefore, often incomprehensible. Replacing unruly and incomprehensible communication with an exchange of laminated pictures improves the effectiveness of the communicative act because these pictures are seen as objects invested with fixed meanings. Building on this idea, effective communication is thus framed as being dependent on ‘procedural reliability’, which, in this case, is established by marking a boundary around the field of communication, enclosing communicative possibilities to a set of plastic cards and the visual symbols on those cards.  

What if we open the door that critical disability studies provide to interrogate some of these normalised structures? Here, I am particularly indebted to Titchkosky’s and Michalko’s provocative idea of disability-as-frame (2012, pp. 127-141). They write, “Like all other phenomena, disability comes to us in a frame and this frame ‘works’ as a guide and even as a rule for recognizing the phenomenon of disability” (p.129). I draw upon this provocation to ask this question: What if we remove our focus from the unreliability and unproductivity of autistic non-verbal communication? What if we look instead at the frames or in other words, the reliability and productivity of communication that we take for granted as desirable? In his influential book on communication, J.L. Austin recognizes the possibility of what he refers to as “infelicity,” (1975, p. 39) or in other words, the possibility of failure of the communicative process. As Austin points out, the possibility of failure is unavoidable in any communication, yet that possibility does not render the act of communication null and void.  Neither is the possibility of failure external to the act of communication – it is not a trap into which communication might fall! Why, then, is the possibility of failure in autistic communication seen as an exception or accident to be guarded against at all costs instead of as intrinsic to the very structure of communication? For instance, my son might indicate that he wants a cookie. Now he could do this by pointing at a picture of a cookie on a PECS chart or by pointing to the actual tin sitting on my kitchen shelf. However, the unreliability of his motor movements may mean that his finger/hand may sometimes land on not the cookie but on the apple symbol on the chart. Perhaps on another day, he will choose to use ASL and point. Again, maybe he points instead to the tea caddy on the same shelf, three tins away from the biscuit tin. As we now see, failures or infelicities may thus happen with or without the PECS chart. Nor is failure necessarily external to the secure space of the PECS chart, that claims to provide this boundaried field within which interlocutors can carry out a reciprocal exchange that securely avoids potential pitfalls. Communication reliability is thus not a given, as the industrial complex would have you believe, but a ‘reliability-frame’ to draw on Titchkosky and Michalko. Not just that, it is a frame dictated by a communication process that is essentially receiver-oriented. In other words, it is reliable to the receiver and not to the initiator of the communicative act. Yet so unexamined and normalised is this frame that any embodied resistance to this, enacted by the supposed ‘initiator,’ implies a failure requiring a ‘solution.’ Examining and re-examining reliability-as-communicative-frame allows us to reject the possibility of failure as a predicament that must be kept away from the positive operation of communication. Only then can unreliable communication be reconceptualised as a positive contingency of communication and an acceptance of uncertainty. 

Let us now look at the second label: productivity. What if we ask more foundationally whether such an indefatigable insistence, not just on reliable communication but any communication, is itself a frame? Is this unrelenting compulsion to communicate not at the very least as undesirable as the ‘refusal to communicate’? Yet in a biomedicalised world of health and therapy, the only thing that seems to be worth interrogating is this ‘unnatural’ communication refusal. As a result, communicability itself is considered frameless and passes as self-explanatory, natural and neutral. Since the preoccupation revolves around how communication can be made ‘productive’ rather than whether or under what conditions it can be so, the idea that the imperative to communicate might itself be undesirable or detrimental remains, once again, unexamined. When we examine productivity-as-a-communicative frame, we begin to discover that for communication to take place, it must always navigate and possibly transcend a matrix of indeterminacies. An autistic human’s silences or interaction avoidances may themselves be productively indicating their agreement, disagreement, indecision, uncertainty over someone else’s meaning, impoliteness, anger, etc. Conversely, the PECS card that a respondent hands over may signal not a fulfilment of productive communication but a demand that must be satisfied before the responder is allowed to exit the intrusively oral and aural world of productive communication. The communicative act thus performed is not a fulfilment but the enactment of a gap or rupture about which the subject cannot stay silent. 

The cultural reality of communication means that communication always inherently involves a certain incommunicable element. Indeed, if ‘productive’ communicability is defined as the capacity to transfer meanings seamlessly from one mind to another, would this not also imply the termination of communication itself? 

In summary, my purpose in this paper has been to trace autistic communication using PECS and to specify the need for a reflexive critical disability politics around medicalised and reparative therapies with which we surround autistic, non-verbal children and adults. By examining and examining again the frames of reliability and productivity that pass unnoticed as desirable communicative outcomes – as represented by the PECS tool – we open up spaces to trace cracks and ruptures in these frames that present the risk of failure, or even the refusal to communicate as equally constitutive of communication. 

Works Cited

Austin, J. L. (1975). How to do things with words. Harvard University Press.

Broderick, A. A., & Roscigno, R. (2021). Autism, inc.: The autism industrial complex. Journal of Disability Studies in Education, 2(1), 77–101.

McGuire, A. (2016). War on autism: On the cultural logic of normative violence. University of Michigan Press.

Michalko, R. (2002). The Difference that Disability Makes. Temple University Press.

Titchkosky, T., Michalko, R., Hughes, B., Goodley, D., & Davis, L. (2012). The Body as the Problem of Individuality: A Phenomenological Disability Studies Approach. In Disability and Social Theory (pp. 127–142). Palgrave Macmillan UK. https://doi.org/10.1057/9781137023001_8

Kim Fernandes
Kim Fernandes is a researcher, writer and educator interested in disability, data and technology in urban India. They are currently a postdoctoral fellow in the Faculty of Information at the University of Toronto. Fernandes holds a joint Ph.D. with Distinction in Anthropology & Interdisciplinary Studies in Human Development in 2024. Their recent work has been funded by the Social Science Research Council and the Taraknath Das Foundation’s Marion Jemmott Fellowship. Fernandes also holds an M.S.Ed. from the University of Pennsylvania, an Ed.M. in International Education Policy from Harvard University, and a B.S.F.S. (honors) in International Politics from Georgetown University.

Title: Skepticism with/in/as Crip Technoscience: Disabilities and Technologies 

Abstract: Where and how might we place skepticism in understanding what technology does to/for disability, and vice versa? This reflection attends to disability as cultural production through technology (assistive and otherwise) with the intention to locate both productive and difficult tensions in how we come to think of what technology is "good" for. Beginning with an attention to the assumptions that often shape the development of new technologies in the popular cultural imagination, this reflection will then move to a meditation on the role of skepticism within the praxis of crip technoscience. In asking how disabled people and communities respond to technoscientific advances, the reflection also attends to how and where (else) we might make meaning of narratives of progress.

Skepticism with/in/as Crip Technoscience: Disabilities and Technologies

Where – and when, and how - does disability come to count? In this provocation, I think with what technology does to and for disability, particularly in relation to the question of counting and being counted. Materially, over the last few years, as an anthropologist, I have thought about this question from urban India as a geographical site. In India, disability is most frequently quantified as a percentage, one that appears on an individual’s government-issued disability certificate or unique disability ID (UDID) card. So, as an example, your disability percentage on government documentation might indicate that you are 40% blind, or 60% deaf, or other such markers. Today, in thinking about certification as a technology, I draw from my first project, Quantifying the Body: Disability, Data and Governance in Urban India, which attends to the often-intertwined processes of identifying and enumerating disability. Most recently, the UDID card has been widely hailed as a technology of identification and enumeration that simplifies and makes more transparent the state’s endeavor to make disability count, or, put more simply, a technology for “good.” So in this provocation, I look at what this technology of quantifying the body is good for. And although I think most extensively with India, the contours of state attempts at quantifying disability (whether as a percentage or another kind of number) are likely not unfamiliar to those of you thinking alongside me today from many other corners of the world, where the measurement process can look somewhat similar but also feel very different.

I often think about the ways that numbers follow us through the world, particularly ones like a disability percentage. Many of you are probably wondering, too, what it means to have a disability percentage, to come to inhabit a number assigned on the basis of static ideas about impairment and functioning. When I first began research on the process of disability certification, I spoke with many disabled people who detailed for me what it was like to make their everyday experiences legible as a percentage. During these conversations, I also noticed that several people introduced themselves as the percentage when talking about their disability(/ies), telling me not only what their disabilities were, but also what percentage disabled they’d been medically evaluated to be.

My first instinct across these conversations was to think of the percentage as something that one might wholeheartedly reject, in no small part because I was curious about how a person could stay at a fixed percentage of disability across days and months, especially when so much about being disabled – and living as such – depends on the environment. However, as I sat with (and bristled against) the question of the percentage both as a number and as a means through which disabled people had learnt to make themselves legible to the state, I noticed that there was a significant amount of negotiation that went into determining the percentage. Rather than it being assigned – and experienced – solely as a one-way determination of disability, in more conversations than I can count, I heard people tell me about the kinds of work that went into making oneself legible in the eyes of the state. This work (which, as so many of us know, is enormous) is the kind that disabled people often undertake from a place of skepticism, rather than of wholesale acceptance of being handed a measurement. 

I want to stay with the idea of the percentage as a negotiation, a contestation, for the remainder of this provocation. I do so because there is a peculiarity in how a numerical category assigned by medical and bureaucratic experts can come to have several differing, dynamic meanings. Numbers, after all, and percentages especially, are not thought of at face value as indicative of unresolved spaces – to refer to something as 35% of something else is to understand it as a ratio expressed as a fraction or a part per hundred. I then began to think more closely about what it means for a disability percentage to be understood as a dynamic form of identification, and by extension, a shifting category of citizenship, even when the process of certification aims to establish numerical certainty in belonging to this category. I thought about this question through a wide range of lenses, but today, I want to stay with a single piece for the remainder of our time together.

In their foundational text, “Crip Technoscience Manifesto,” Aimi Hamraie and Kelly Fritsch define crip technoscience as “a field of critical scholarship, practice and activism…[that] braids together two provocative concepts: “crip,” the non-compliant, anti-assimilationist position that disability is a desirable part of the world, and “technoscience,” the co-production of science, technology, and political life (Jasanoff 2004, Murphy 2012)” (Hamraie and Fritsh 2019, 2). They outline four commitments of crip technoscience as a means through which to “struggle for a more accessible future in which disability is anticipated, welcomed, and in which disabled people thrive” (Hamraie and Fritsch 2019, 6). These commitments include a centering of the work that disabled people do as “knowers and makers” (Hamraie and Fritsch 2019, 7), as well as an approach to “interdependence as political technology” (Hamraie and Fritsch 2019, 12). 

Here, I want to consider the powerful role that skepticism plays as a crip technoscientific practice. I mark skepticism as an affect and approach that is distinct from acceptance, which is to say, even in describing earlier that many disabled people introduced themselves to me as, among other things, their disability percentage, I do not read this as their acceptance of the percentage. As I often observed, the percentage was presented in introductions as a way of signaling one’s legitimacy in belonging to disability (specifically, disability as the state might count it through the process of disability certification). Despite this presentation, however, the people who introduced themselves with a disability percentage would frequently add later that they did not mean to indicate an unquestioning acceptance of this process of assigning a number to one’s disability. 

As one of my research participants who had gone through the certification process several times over told me: “Never think we are just getting a disability percentage – even if we don’t want the disability certificate, all of us have to try and negotiate it to make doctors understand what our lives are like.” In that same conversation, another person added, “No matter what the system asks of us, as disabled people, our job is to make it [the system] work for us.” In thinking with disabled peoples’ responses to certification as a process of state-mandated legibility, I am struck by the ways that disabled people used technoscience “to survive and alter the very systems that produce disability or attempt to render us as broken” (Hamraie and Fritsch 2019, 20). Often, despite recognizing the particular failures of these systems, disabled people continue to approach the percentage as a way to negotiate their place in the system.

There are many kinds of work that disabled people do to negotiate a percentage, whether it is sharing experiences with others who are going through the certification process, offering recommendations for the kinds of supporting documentation that might help ease bureaucratic hurdles, or suggesting hospitals and doctors that are more likely to be willing to understand certification as a negotiation, rather than disability as an experience to be accounted away. All these kinds of work are informed by disabled peoples’ everyday expertise (Dokumaci 2023, Hartblay 2020). Although many people I spoke with were previously not familiar with the certification process and its demands, going through the process led them to develop various kinds of expertise in navigating it. 

Arguably, much of this expert work that disabled people do can be seen as done toward making oneself legible within – and to – a system that does little to make room for the needs and lived experiences of disabled people. However, it is also worth pausing here to think about these efforts as crip engagements with technology in ways that ensure technology can be moved toward – and in service of - disabled peoples’ goals. In responding to the ways that technologies of identification and enumeration attempt to define the body, disabled people deploy a sustained skepticism as crip technoscientific practice.

This skepticism in turn allows for disabled people to navigate a system when they don’t have too many ways out of or around it. The skepticism toward being counted, even when continuing to participate in state processes of counting, shapes how disabled people interact with the state’s identification and enumeration efforts. Through this provocation, my purpose has been to trouble the idea that participation in being counted can be read as agreement with the process. I stayed with skepticism in particular as a response from disabled people and communities to a technoscientific “advancement” in the process of identifying and measuring disability. In doing so, I hope to have opened up ways through which to read and place some of the tensions that are inherent not only in skepticism, but also in other crip affects and practices.

References

Dokumaci, Arseli. 2023. Activist Affordances: How Disabled People Improvise More Habitable Worlds. Durham, NC: Duke University Press.

Hamraie, Aimi, and Kelly Fritsch. 2019. “Crip Technoscience Manifesto.” Catalyst: Feminism, Theory, Technoscience 5 (1): 1 – 33.

Hartblay, Cassandra. 2020. “Disability Expertise: Claiming Disability Anthropology.” Current Anthropology 61 (S21): S26 – S36.

Jasanoff, Sheila. 2004. States of Knowledge: The Co-Production of Science and Social Order. London: Routledge.

Murphy, M. 2012. Seizing the Means of Reproduction: Entanglements of Feminism, Health and Technoscience. Durham, NC: Duke University Press.