Francesca Lewis attends to the growing movement of neuroqueer medical humanities and the potential of kaleidoscopic analysis in lived experience research.
I recently completed my doctoral research exploring the possibilities of what I call “borderline experience”. I did this as a person with a borderline personality disorder (BPD) diagnosis, as someone critical of the diagnostic category and its history of harm, but deeply interested in the heightened, shifting lived experience as I understand it, as I live it.
Speaking from my mad experience can often feel like being in a jar, captive and on display for the eyes of the curious. Of course, not all curiosity is malicious. Well-meaning people sometimes tell me, after I present my theory-heavy research, that I am brave or inspiring or that my voice is important. I would never dismiss these comments, because I know that there have been and still are times and places where I would not be allowed to speak at all, or where it would not be safe.
But the work of mad scholars, and our presence in academic spaces, is not necessarily, and certainly not only, about accurately representing our diagnoses. Though lived experience work is often valued in the medical humanities, its perceived value can tend to be limited to what mad people can tell us about madness. We are told that we are the experts on our experience. Unfortunately this valuing of expertise can tend to begin and end with the light we can shed on our diagnosis and the patient experience. I think that what this misses is that lived experience scholarship has the potential to bring urgently needed new critical perspectives, including critiques of how we understand particular diagnoses and also ways of thinking, feeling, knowing, and doing otherwise.
My own work on borderline experience is part of a growing movement of neuroqueer scholarship calling for neurodivergent experiences to be treated as valuable ways of knowing. The term “neurodivergent” was coined by disability activist Kassiane Asasumasu in 2000 (Chapman, 2021), who saw neurodivergence as encompassing autism, ADHD, mental illnesses, and any experience that deviates from neuro-norms.
Queer neurodivergent academic and writer Nick Walker, who coined the term with fellow neurodivergents Athena Lynn Michaels-Dillon and Remi Yergeau, described neuroqueering as “understanding and approaching neurodivergence in ways that are inspired by, or similar to, the ways in which queerness is understood and approached in Queer Theory, Gender Studies, and/or queer activism.” Neuroqueer can be a verb, describing “a broad range of interrelated practices […] intended to ‘undo’ one’s cultural conditioning toward conformity and compliance with dominant norms, with the aim of reclaiming one’s capacity to give more full expression to one’s neurodivergence and/or one’s uniquely weird personal potentials and inclinations” (Walker, 2021). Walker (author of Neuroqueer Heresies, 2021) and Yergeau (Authoring Autism, 2017) brought this pioneering neuroqueer spirit to their academic work, exploring the possibilities of autistic thinking and knowing.
The neuroqueer approach has been more recently expanded to the possibilities of borderline ways of thinking and knowing. Lived experience researcher Sarah Redikopp describes herself as “a queer borderline advocating for borderline knowing and for recognition of our lived experience and our uncontrollable emotions as valid forms of counter-knowledge” (Redikopp, 2018, 79). Though Redikopp does not use the term neuroqueer, she does think through and with queer and queer/crip theory. Disability scholar Merri Lisa Johnson, another fellow queer borderline, has been neuroqueering since before there was a word for it. She proposed in 2014 that borderline can be a “way of seeing” or “critical optic” and has been at the forefront of queer/crip studies in her work with Robert McRuer (Johnson, 2014). In a 2021 paper, Johnson explicitly discussed what neuroqueering might do for BPD, calling for a move away from previous feminist debunkings of the borderline concept, “turning with tenderness toward borderline personality disorder as a neurologically queer intersectional embodiment” (Johnson, 2021, 636).
While all these writers may be deepening and complexifying our knowledge of particular forms of neurodivergence from a lived experience perspective, I think it is vital to recognise that the neuroqueer movement does more than this. Academic work on neurodivergence can often amount to, if you’ll indulge the metaphor, looking at “experience” under various kinds of microscopes, looking closer and closer at the same old picture (often the one painted by the DSM). Neuroqueering – that active doing verb – can turn the inert and static microscope into a kaleidoscope. With each turn the picture is rearranged: diverging, queering. Neuroqueering is not just about seeing madness more clearly but about seeing the world with fresh mad eyes.
My own work on borderline experience combines neuroqueer theory with feminist new materialism, a field of philosophy described by Sarah E Truman as “a porous field influenced by feminist science and technology studies, the environmental humanities, the thought of Gilles Deleuze and Félix Guattari, transgender and queer studies, and affect studies” (Truman, 2019). In new materialist theory, the emphasis is placed on processes rather than on essences. New materialism rejects the idea that binary oppositions such as nature/culture, self/other, or man/woman structure our world, in favour of an understanding of matter, subjectivity, and life as unfolding immanence, a process of perpetual becoming (Dolphijn and van der Tuin, 2012).
Much of what is celebrated in new materialism is pathologized in the borderline diagnosis. New materialists see life as a flow of intensities, with fluid boundaries, without fixed properties or identities, operating in a rhizomatic (non-linear, unpredictable) manner. These are exactly the same qualities typically pathologized in the borderline: fluidity, instability, flux.
Borderline instability was encoded as BPD’s ‘essential feature’ in DSM-III’s (APA, 1980), when the diagnosis was first formalised. In psychoanalytic writings borderline patients have been called “stable in their instability” with an “unstable ego”. Today’s DSM-5 (APA, 2013) criteria describes “unstable self-image and emotional experiences”, “intense, unstable, and conflicted close relationships”, and “instability in goals, aspirations, values, or career plans”. As someone who lives this, I will never romanticise or downplay how distressing these experiences can be. But I do strongly question the idea that they are wholly and singularly negative.
Feminist new materialist Rosi Braidotti calls for us to “reassert the dynamic nature of thinking”, “privilege change and motion over stability” (Braidotti, 2011, 7 & 29). As a Deleuzian, Braidotti thinks in terms of “becomings”, describing the body as a “threshold of transformations” and “a surface of intensities”, “an affective field in interaction with others” (Braidotti, 2012, 34). Dynamic thinking, change and motion, transformations, intensities and affects – all of this suggests an affirmative relationship with instability. If something is unstable it is also unfixed and unmoored, not engaged in reproducing the same white/masculine/abled thinking.
The knowledges produced by having such an intimate relationship with the indeterminate and ever-shifting flux of becoming can be meaningful far beyond the clinical context and the diagnostic construct of BPD. Deleuze saw writers as diagnosticians who were diagnosing not themselves but the world. I view the borderline’s instability not as something that tells us only about itself, only evidence of a pathology but as knowledge about the world – as a queer kind of diagnostic or philosophical knowledge.
Being part of this growing movement towards neuroqueer knowledges, with neurodivergent scholars like Walker, Yergeau, Redikopp, and Johnson, is exciting. Like the queer, feminist, and poststructuralist theories that informed it, neuroqueer theory has the potential to radically shake up established norms, restrictive binaries, and structures of oppression. It can bring new insights to established disciplines. The scholars I have discussed today work across quite different disciplines and methodologies, bringing new cultural, social, rhetorical, psychological and philosophical perspectives.
The question for me, as that person so often placed in the jar as inspiring curiosity, so often understood as merely a new more finely calibrated microscope to more accurately define my diagnosis, is can the wider academic community open up and embrace the kaleidoscopic possibilities of neuroqueer lived experience research?
All academic work, whether it foregrounds this or not, draws on the lived experience of its author. Even René Descartes, one of the main antagonists of many justice-oriented disciplines due to his role in codifying the Cartesian dualism of mind vs body, was writing about his own experience when he claimed, “I think therefore I am” (Descartes, 1998, 18). The difference between someone like Descartes or the host of mostly straight white men whose philosophical ideas dominate academic life is that they, as the assumed universal, need not own their positionality, their situatedness. What is true for them is understood as true for everyone. Neuroqueer perspectives claim no such universality, instead offering plurality, specificity, possibility. It is this kaleidoscopic possibility that we, in academia and beyond, really need if we are ever to escape from the jar, from the microscope, from the humanist idea that there is only one way to think, feel, or know.
Francesca Lewis recently completed her PhD at the Centre for Women’s Studies, University of York. Her current research interests include feminist new materialisms, neuroqueer approaches to madness, and onto-epistemology. She is co-founder (with Veronica Heney) of the Mad Feeling Collective, an interdisciplinary research collective which brings lived experience and affect-led approaches to explorations of madness on TV. You can follow Francesca on Twitter @DrFMLewis.
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