On Developing an Ear
by Janette Dinishak
Discussions of the value of public philosophy often center on what public work by philosophers can do for the public. The question “What could ‘public philosophy’ do for philosophy today?” prompts one to consider the other direction of influence: how public engagement could benefit philosophy.
Given the variety of public philosophy and ways of understanding their potential value I hesitate to say anything general in answer to the question. Instead, I reflect on some personal experiences of some forms of publicly engaged philosophy and some ways they have positively influenced how I approach philosophical inquiry on autism.
Autistic autobiography
As a graduate student in philosophy, I had a research assistantship where my main assignment was to read a selection of autistic autobiographies and reach out to some of their authors. My first introduction to autism – through the words of autistic autobiographers – had a profound effect on how I approach studying autism.
Soon after, I began familiarizing myself with the philosophical and scientific literatures on autism. Both were at odds with what I found in the autobiographies that I was reading and my personal experience corresponding with their authors. Those theoretical works regularly portrayed autistic people* as unable to understand metaphor and lacking imagination. My reading Tito Rajarshi Mukhopadhyay’s poetry in The Mind Tree (2003) cast serious doubt on this portrayal. For example, Tito writes:
I am the mind tree
When I had been gifted this mind of mine
I recall his voice very clearly
To you I have given this mind
And you shall be the only kind
No one ever will like you be
And I name you the mind tree
The expressive power of the mind tree metaphor, being “gifted this mind”, and the striking naming ceremony so vividly described ran against the ‘lack of imagination’ portrayal in theoretical works.
Reading Donna Williams’ s Nobody Nowhere (1992) and corresponding with her about the challenges of ‘getting inside the other’s mind’, I encountered subtle observation after subtle observation of her own and others’ feelings, thoughts, and intentions. Nobody Nowhere is filled with prose and poetry conveying and evoking intense feeling. None of this accorded with what existing theories of autism suggested about autistic people’s supposedly ‘thin’ inner lives and hypothesized lack of interest in connecting with others. After exposure to autistic individuals’ personal accounts of their experiences being autistic, I was struck by the theoretical focus on what’s supposedly missing or absent in autistic people, often to the exclusion of attending to the presence of different and complex ways of seeing, sensing, and interacting with the world and other people. Tito and Donna helped me develop a skeptical attitude toward ‘deficit views’ of autism more generally. I began thinking more about not only the ethical danger but also the conceptual destitution of a deficit-focused construal of autism, which merely identifies what something is not, what it lacks, by comparison with something else that has those attributes, capacities, and so forth. Conceptualizing autistic experience and capacity as just the absence of what ‘normal people’ have is dehumanizing. It can also be conceptually constraining in threatening to compromise our ability to conceive what is qualitatively distinct about autism.
I was starting to learn about and also how to learn about autism, by listening to autistic people.
* Whether person-first (e.g., ‘person with autism’) or autism-first (e.g., ‘autistic person’) is preferable is a subject of much debate. I use identity-first language because many autistic people prefer it to person-first language. For a helpful overview of the debate on language used to describe autism see the terminology guidance page for the journal, Autism.
Autistic self-advocacy
The first autism conference I ever attended was AutCom 2008 organized by the Autism National Committee, an autism advocacy organization with a focus on non-speaking autistics’ right to use augmentative and alternative communication. Ian Hacking sent me there as part of my research assistantship with the following instructions: “Make contact with autistic people, and be a good ear.” I attended as many sessions as I could and took opportunities simply to be in the company of autistic people present, sharing meals and conversing between the sessions.
At AutCom I became acquainted with autistic self-advocacy. Mel Baggs, whose short film In My Language I had just seen, was part of a panel entitled A Little Experience Upsets a Lot of Theory. They called out the disconnect between how autism researchers conceptualized autism and what it is like to be autistic, and expressed frustration at how little existing research helped with understanding and supporting autistic people. At another panel discussion autistic participants shared life stories highlighting how their sensory, perceptual, and movement differences manifest in their daily activities and interactions. One panelist, Jacob, described his apraxia: “My body doesn’t do what I want it to do.” This means that he has trouble starting a movement because it takes time to “organize” himself and that he has trouble stopping and switching movement. For example, sometimes he makes noises even when he finds this embarrassing. His apraxia causes him enormous anxiety. Autistic people presenting at AutCom that year repeatedly asserted that these differences were a fundamental and important aspect of their lives and yet the character and significance of sensory, perceptual, and movement differences remained under-explored in academic research on autism at the time.
This ‘fieldwork’ sensitized me to autistic people’s own stake in generating a broader and richer understanding of autistic people’s experiences, ethically, politically, practically, personally. What questions do autistic people have that they want researched? What do they need from research? What are their critiques of the way autism research is done? Hearing the slogan: “Nothing about us without us” spurred my reflection upon the intersections between activism, advocacy, and scholarship in work on autism.
Performative inquiry
As a faculty member in philosophy at UC Santa Cruz I was invited to join Fog Body – “a growing and shifting constellation of people and actions” (Fog Inquiry) – and in 2020 I took part in a performative inquiry centered on Albert Narath’s (UC Santa Cruz, history of art and visual culture) research on the history of campus design and my research on the pathologization and de-pathologization of autistic differences. The project, Borders, was part of Futurefarmers’ Fog Inquiry, Wandering Seminar series hosted by UC Santa Cruz’s Institute of the Arts and Sciences and led by artist Amy Franceschini and architect Lode Vranken of Futurefarmers.
Borders culminated in a performance on campus, in which the group of collaborators along with 15 or so participants hiked across campus in a line. They started at the Mima Meadow and ended at Kresge College, each with a different prop selected for its ability to modify ordinary sensory experience. As we hiked through the meadow, crossed bridges, and passed campus buildings we sought to investigate value-laden distinctions such as order/disorder and health/illness that manifest in architectural design; to encourage imagining how spaces might be designed to promote autistic well-being and sociality; and to stimulate curiosity in and discussions on these topics with passers-by encountered along the journey.
Speaking of borders, UC Santa Cruz borders Pogonip Park. ‘Pogonip’ is thought to derive from a Shoshone word ‘payinappih’ (‘cloud’) and describes a kind of ice fog. With this in mind:
Fog Inquiry uses the physical phenomena of fog as a conceptual framework to engage various fields of inquiry within the university setting. Futurefarmers sees fog as a state of being whereby hierarchies get troubled, perspectives shift, and new modes of thinking (and making) can emerge (Fog Inquiry).
Fog Inquiry invited me to let go of control: to playfully experiment with how and when to use words to express what it was collaborators were doing in Borders and how and when to let what we were making come into being in wordless ways, through how we moved and interacted with one another and passers-by.
Being publicly and socially engaged in this instance wasn’t engagement with autistics, as there were no autistic people on the team of collaborators, although we may have unknowingly interacted with autistic individuals as we made our way across campus. Autistic perspectives were represented indirectly through background research and questions that informed the performative inquiry. Lack of participation by autistic people limited what we were able to create and discover. In Being Autistic Together (2010), autistic autism rights activist Jim Sinclair distinguishes “autistic spaces” from “places for autistics”. Non-autistics set the agenda, make the rules, and create structure in places for autistics. By contrast, autistic spaces are physical and virtual spaces designed by and for autistic people themselves. Autistic spaces allow for autistic subjectivities and sociality that places for autistics can’t. Borders made possible imaginative experiences of new kinds of places for autistics, not autistic spaces. In this way I became more aware of limitations on the kinds of contributions I can make to understanding autism, limitations due in part by not being autistic myself.
How have these engagements influenced how I approach philosophical inquiry on autism? These were small but personally impactful steps in the lifelong process of becoming a good ear. I learned how to listen for disconnects between autistics’ experiences of being autistic and depictions of autism, especially deficit-based depictions. The engagements opened me to rethinking my conception of 'expertise' and destabilized my own expertise. I learned ways of centering autistic experience and came to recognize that autistic people’s experiential expertise is crucial to improving progress in understanding autism and supporting autistic flourishing.
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REFERENCES
Baggs, Mel. (2007, January 14). In My Language. [Video]. YouTube.
Borders Log Book. Futurefarmers.com.
Fog Inquiry. Futurefarmers.com.
Merriam-Webster. Pogonip. In Merriam-Webster.com dictionary. Retrieved May 15, 2022.
Mukhopadhyay, Tito Rajarshi. (2003). The Mind Tree. New York, NY: Arcade.
Sinclair, Jim. (2010). Being Autistic Together. Disability Studies Quarterly 30, 1.
Terminology guidance. Autism: The International Journal of Research and Practice.
Weinberg, Justin. (2019, March 5). The Variety and Value of Public Philosophy. Daily Nous.
Williams, Donna. (1992). Nobody Nowhere. London: Doubleday.
