My disability and the monotropic fire in me

“Are you disabled?” my therapist asked me, during one of our sessions several months ago. Her question came in response to something I said that, in hindsight, sure sounded like I thought I was disabled. The question made me immediately uncomfortable, and I backed away from the label “disabled”, saying something like, “I wouldn’t go that far”. 

I’d been struggling with how to understand the challenges of being neurodivergent in a neuronormative world. Even at the time, I was unsatisfied and uncomfortable with my thinking. My mind went to the struggle with my former employer over accommodations for my mental health. If not a disability, then what had I hoped they would accommodate? 

I’m not alone in trying to distance myself from the label “disabled”. Disability studies scholar Rosemarie Garland-Thomson writes about how she came to understand herself as disabled. Even though she was born with a body that others regularly perceive as disabled, she explains that, as a young person, she resisted identifying as disabled. She writes about her younger self’s denial of disability:

With no context for a politicized understanding of disability, I resisted engulfment by medical deviance and condescending benevolence. Those were the only available disability places I saw around me. I had no language for any of this; my resistance came from a sense of survival not political awareness. That left me with no identity navigation tools except denial. It was hard work to pretend my disability did not exist and had no effect on my life or on others. Since my entry into disability culture, I have heard this same story many times from colleagues with disabilities as salient as mine.

Garland-Thomson explains that she developed a politicized understanding of disability while in graduate school in the 1980s. She read feminist social theory and “repurporsed it” into her “own version of disability studies”, which helped her develop her “politicized understanding of disability”.

Since the 1980s, Garland-Thomson and other disability studies scholars have written about disability as a socially constructed identity category. In her essay, Garland-Thomson explains the social construction of disabled identity in the following manner: “when our embodied ways of being in the world come to be understood as disabilities or when we understand our way as disabled, we then enter the category”. Disability studies scholars have written about disability in ways that directly contradict most people’s understanding of disability, including these writers’ own earlier selves’. This “common sense” understanding of disability that all or most of us seem to be socialized into is known as “ableism”. 

Disability studies scholar Fiona Kumari Campbell has written extensively about the ideology of ableism, and her work can help us see how ableism is at work in my own and others’ avoidance of the label “disabled”. Campbell argues that ableism consists of two core ideas. The first is a belief in the existence of people whose minds and bodies (or “bodyminds”) are normatively able. The second is a belief that humanity can be neatly divided into two categories: those who are disabled and those who are not. 

With respect to the first belief, Campbell writes that ableism invites us to act as though defining or conceptualizing what it means to possess an able body and (sane) mind is a straightforward process. Ableism invites us to believe in a “corporeal standard”. Campbell notes, however, that this standard is elusive and largely defined by what it is not. In other words, we tend to think of the able body and mind (or “bodyminds”), simply as that which is not disabled, resulting in what Campbell refers to as “a game of circular reductionism”. 

The second core belief that Campbell describes in her theory of ableism is a persistent belief in the ability to divide humanity into neat categories of “able” and “disabled”. It is not difficult to show that this binary is fraught with problems. Indeed, my own story of wrestling with whether or not I am disabled is a clear illustration of how it is not simple to draw a line between “able” and “disabled” people. Nonetheless, Campbell reminds us that ableism glosses over this incoherence and implores us to hold “stoically to the distinction between ableness and disabledness”. 

It is simple to show that ableism’s core ideas are flawed, nonsensical, or inaccurate.  Campbell reminds us, however, that ableism is powerful, not because it is right or true or good, but because it emanates from privilege. Ultimately, Campbell’s theory of ableism suggests, among many other things, that there are powerful incentives to avoid being placed in the “disabled” category. 

Literacy education scholar Sara Kersten-Parrish writes about her reluctance to be placed in the “disabled” category. Kersten-Parrish is a deaf woman who, throughout her early life, passed for hearing. However, when the COVID-19 pandemic began, Kersten-Parrish found herself increasingly disabled by the sudden changes in routine communication practices, which rendered it impossible to rely on the communicative practices she had once used to compensate for her impaired hearing. For example, at the start of the pandemic, she suddenly found it difficult to read lips, both in person, due to masks, and in video conferencing sessions, due to technological constraints. 

Kersten-Parrish argues that the experience of being suddenly disabled by the onset of the pandemic led her to rethink her earlier ways of being a deaf person in a hearing world: 

Just as society has been inundated with tales of disabled woes and overcoming, I too, have read and bought into some of those stories. I saw myself as the overcomer since society required that of me. Society said I talked about my disability too much as a young child, so I shut up and closed off. Society said I needed to fit the norm, so I shaped myself irregularly into that warped framework of self. 

Like Kersten-Parrish, neurodivergent people are commonly told to “fit the norm”. Autistic people commonly speak about “masking” our neurodivergent traits. Psychologist Amy Pearson and neurodivergent author and activist Kieran Rose define autistic masking in the following way: “the conscious or unconscious suppression of natural responses and adoption of alternatives across a range of domains including social interaction, sensory experience, cognition, movement, and behavior”. Regarding social interaction, Pearson and Rose explain that 

The social norms of autistic people differ to those of the dominant social group, and “passing as normal” or attempting to pass as normal might relieve external consequences (such as bullying) while increasing internal consequences (such as exhaustion and burnout).

I’ve previously written about how I find eye contact uncomfortable. Because I am aware of the prevailing social preference for eye contact, I deliberately attempt to make eye contact (or appear like I’m making eye contact) especially with people I have just met. In this way, I try to mask my neurodivergent gaze and avoid stigma and discrimination. I, like many autistic people, can mask my autistic gaze and other neurodivergent traits quite effectively, meaning people rarely notice these traits when I’m in public. It is uncomfortable but manageable to mask as long as I am not under other kinds of stress. When combined with other forms of stress, such as perceiving myself to be attacked by others, eye contact often becomes unbearable for me. Even so, since I’m aware that maintaining my mask is more difficult in certain situations, I simply avoid them so as not to find myself feeling overwhelmed. My avoidance of particular people and situations is part of my mask, another way I hide my neurodivergence.

Hiding one’s disability is not always an option. For example, Rosemarie Garland-Thomson observes of herself: “I wear my disability on my sleeve most of the time because the physical form of my arms and hands is quite unusual and noticeable”. Nonetheless, ableism creates powerful incentives. In response to those incentives, as a young person, Garland-Thomson acknowledges that she performed a lot of “hard work to pretend my disability did not exist and had no effect on my life or on others”.

In a similar essay, disability studies scholar Cynthia Bruce reflects on her attempts to demonstrate academic and musical ability to counteract others’ perceptions of her and her blindness. In the essay, Bruce discusses the strategies she used to subvert others’ ableist perceptions of her blindness: 

As a blind adolescent, natural musical ability that often surpassed that of my peers became the ground on which my thinking about the importance of normalcy was solidified. The growth of my talent led to accolades from peers and mentors alike, and I began to see musicianship as the path to a life that would see blindness overpowered by normalcy. After all, blindness did not have anything to do with who I was; it was simply an inconvenient sensory fact that was not going to obstruct my success.

Looking back at that earlier period in her life, Bruce writes about her eagerness to circumvent ableist perceptions of her blindness through demonstrations of her musical and other abilities. Ultimately, she acknowledges that she, like most of us, had internalized ableism: 

I had fully assimilated the belief that demonstrating ability was the only way to succeed. So I had frequently taken advantage of, and even sought out, opportunities to express my abilities to succeed in a non-disabled world. For me, these were repeated acts of resistance that allowed me to emulate ‘normal’ with increasing success. 

Bruce’s account illustrates, once again, the powerful incentives that ableism creates for all people to avoid the “disabled” category, to be perceived as “normal” or “able”. These powerful incentives initially pushed Bruce toward using her musical abilities to subvert ableist perceptions of her blindness. 

Similarly, neurodivergent people are incentivized and implored to mask the neurodivergent traits that others find unappealing and harness the ones that others value for economic gain. For example, some neurodivergent people have hyperfocusing traits that are seen as valuable within a capitalist system. Jen Rinaldi, a disability studies scholar, is one such person. She reports having neurodivergent traits that have facilitated her career success. In this essay, she discusses her own reticence to disclose her disability publicly, even to her colleagues in disability studies. Rinaldi describes herself as having struggled privately with disordered eating and more generally with obsessive compulsive disorder. She writes

I have obsessive-compulsive disorder. I have a preoccupation with schedules and a fondness for charts, so much so that deviations, be they tardiness, changes in plans, or typos, send me reeling. I have difficulties interacting with others, masked by both the academic rigour I apply to developing formulae for social engagement and the privacy I seek out when I have panic attacks preceding phone calls, conversations in transit, strangers in my home, and especially parties

Rinaldi makes clear in her essay that she is reluctant to offer up her story and publicly identify as disabled for two reasons. First, and perhaps most obviously, revealing these things about herself as well as the fact that she has kept them hidden for years causes her pain and embarrassment.

Second, she notes that her obsessive-compulsive traits are intimately connected to her career success. For example, it is not hard to imagine that “a preoccupation with schedules and a fondness for charts” could make one well suited for many, especially white-collar, occupations. Ableism implores us to think of disability as incompetent, inadequate, and ugly, but Rinaldi suggests her disability is a large part of what makes her “competent, successful, and maybe even pretty”. In other words, ableism renders Rinaldi’s disability identity unrecognizable to others because, as Campbell reminds us “ableist discourses proclaim quite emphatically that disability is inherently negative, ontologically intolerable – and in the end a dispensable remnant.” Ableism invites us to think of disabled lives as undesirable and disabled experiences as impoverished. 

Speaking back to ableism’s ugly lies about disabled people’s lives and experiences is key to resisting it. Bruce, with inspiration from Campbell, suggests that “we begin framing our stories in ways that embrace impairment and frame success in terms of ‘because disability’ to speak back to the ableist tendency to frame our “success as in spite of disability”. One of the stories in Bruce’s essay highlights her former music professors’ astonishment at her propensity for analyzing music by ear, a skill that has undoubtedly been honed by the fact that working “by ear” in this way is common for Bruce, a blind woman, unlike her sighted counterparts who are much more likely to rely on visual representations of music to facilitate analysis. Hence, Bruce’s remarkable musical abilities can be seen as, in part, “because disability”. 

Rinaldi also notes that her success as a scholar is, in part, “because disability”. This is true of me as well. Like many autistic people, I have a monotropic attention, a concept first proposed by Dinah Murray and her colleagues (paywall, or copy of Murray et al. 2005 hosted on Researchgate). Fergus Murray, a neurodivergent science teacher and writer (and Dinah Murray’s son), describes the concept in the following way: 

Monotropism is the tendency for our interests to pull us in more strongly than most people. It rests on a model of the mind as an ‘interest system’: we are all interested in many things, and our interests help direct our attention. Different interests are salient at different times. In a monotropic mind, fewer interests tend to be aroused at any time, and they attract more of our processing resources, making it harder to deal with things outside of our current attention tunnel.

Nonautistic people often perceive autistic people’s interests as “narrow” or “restricted”. Fergus Murray notes that these nonautistic perceptions of autistic attention show up in diagnostic criteria for autism. The concept of monotropism provides an alternative non-pathologizing way of thinking about autistic attention: autistic people tend to focus on fewer things and persist in that focus for longer than their nonautistic counterparts.

People with monotropic attentions tend to be unrelentingly focused on completing our current task, whatever that is to us. This can be a great strength, as it means we often persist in completing things that others find too difficult. Of course, others may quickly become bored or frustrated with a person who is focused on something they do not wish to be focused on. Hence, navigating a neuronormative world with a monotropic attention requires a careful balancing act.

I have harnessed my monotropic attention to great academic and career success. I think of my autistic attention, my monotropism, as the driving force behind my writing and scholarship. Since childhood, I’ve been fascinated by language, communication, discourse, and especially how they relate to power. As a child, I spent a lot of time poring over books about other languages I had checked out from the library. As an adolescent, I was fascinated and terrified by George Orwell’s ideas about the way language and discourse helped to maintain order within a fascist society. When I went to college, I chose to study literature and languages. After college, I went to graduate school, first thinking I would teach English as a second language, and later deciding I wanted to become a linguistics professor. I recognized the abysmally low chances of having job security in higher education in a field like linguistics, so I pushed my monotropic focus to its limits. I read. I learned. I researched. I wrote. I published. I did all of it again and again and again at a rate many others found difficult to comprehend, let alone replicate. My scholarly production was fueled by the monotropic fire in me.

Throughout my life, I have masked my stigmatized neurodivergent traits, like my distaste for eye contact, and used others to my advantage, like my monotropic attention. This awareness that my neurodivergence can be both impairing and empowering contributes to the discomfort I feel identifying myself as “disabled”. My hesitance to identify as “disabled” to my therapist or anyone else stems in part from my awareness that my greatest successes and my greatest challenges have the same cause: the monotropic fire in me. 

The late disability studies scholar David Pfeiffer wrote that “identifying as a person with a disability is an ideological act”, an act that defies ableism. As scholars like Bruce, Campbell, Garland-Thomson, and Rinaldi make clear, it is a complicated act, rendered perilous, or even impossible, by the competing ideological forces of ableism.

My hesitance to claim my disability or to “go that far” was, and is, a capitulation to ableism. Here, then, is my simple but, I hope, powerful act of defiance: Yes, I am disabled. I am disabled by a society that sees the monotropic fire in me as an exploitable resource and is unconcerned by the havoc it causes to my autistic nervous system.