It’s 9:17 am, and I am awakened by an unsteady flame of ache in the nape of my neck, my eyes are sore and itching. Probably because I fell asleep under the pressure of shame while bawling my eyes out. I struggle to get up, staring at my slides on the floor and wondering if they ever look back at me and pity my inability to slip my trembling feet into their embrace. As the pain travels through my spine all the way to the sacrum, I implore my slides, as one would a jilted lover, to carry me to the kitchen and hold me as I brew myself a cup of coffee – a ritual my neuroatypical brain requires to kickstart my day.
But it’s too hard today, my bodymind rejects all my efforts; I close my eyes feeling defeated. Parts of my self are seething in anger and other parts are quaking with guilt due to internalized ableism. I text my mother and she responds, “It’s all in your mind, beta, why don’t you drink some water or do Yoga? Your body will listen. It’s all in your mind…”. My shame strengthens. My pain revolts its dismissal. My bodymind becomes a battleground. Yet again.
To say that I have never felt like I belong anywhere, even the queer and/or disability justice spaces my therapist keeps urging me to go to, would be an understatement. My lack of belongingness feels like a personal failure, as do most things in life. This pattern is often reduced to one-word explanations like “trauma” by friends, family, and therapists – but that’s another term I find impossible to identify with. As I write this, I am trying hard to remain coherent and translate the assemblage of disjointed realities co-existing in my mind using words and language that don’t quite capture their essence.
The aforementioned recollection of my experience with fibromyalgia, which was possibly triggered by burnout from being MAD and/or neuroatypical, is a regular occurrence in my life that feels intensely isolating. Friends and acquaintances that I had fortunately made in my life are now living a completely different reality than mine. During catch-up calls once a month, people would mention traveling, starting new hobbies, and job opportunities as their big wins, but I could only think of leaving my house for the first time in three weeks as an achievement.
I am, relatively speaking, still masking fairly well and doing enough to “pass” as someone almost surviving in this neoliberal late-stage capitalist hellscape. I think that’s a consequence of my privilege, if I didn’t have the (small and virtual) support system, the monetary help from family, and relatively lesser support needs, I know I would be in a much more perilous place than I am at now.
Despite all this privilege, my daily struggles are unrelatable to most people. I am constantly worried about the day when my bodymind will stop listening to my internal bully about moving within this world as if I were an able-bodied cishet person. Internalized ableism can fester within me for as long as it wants, but when this system holding me together burns out, no amount of chastizing is going to make it push past its limit. I am starting to see that limit getting closer every day.
I am pretty self-aware of how much I have always masked and continue to mask as a neuroatypical queer person. My personality feels like a carefully curated and crafted facade that allows me some sense of invisibility. By invisibility, I mean the ability to go unnoticed as someone clearly struggling to fit in the narrowly defined socially accepted neurotype, cis-heterosexuality, and abled-bodiedness. I think most people do pretend in their social life. The compulsory able-bodied, able-minded, heterosexual, gender-binaries are never completely attainable. I have observed that people, even those that seemingly “fit in”, are aspiring to match those unattainable attributes. However, it always feels like I am working overtime and constantly, while others can take the mask off and still operate without feeling alienated. I, unfortunately, never get a break.
I painted this picture for you because I wanted to explain how the idea of neuroqueerness is not just another theoretical curiosity for me. It is that, but it is also so much more. It is a permission I was finally able to give myself to just “be”. I don’t say “be myself” because I don’t know what “self” is for me – another peculiar characteristic of my neurotype. However, having the permission to just “be”, barring even the pressure of expressing my “one True self”, granted me an existence I never thought was possible for me. I am now going to refer to Justine E. Egner’s paper, “The Disability Rights Community Was Never Mine: Neuroqueer Disidentification”, for the rest of this article to explain the liberatory potential of a neuroqueer practice for me.
Egner builds her conclusions about neuroqueer communities using virtual ethnography from online blogs and the internet. From her observations, she found that neuroqueer communities practice “disidentification”, a concept theorized by José Esteban Muñoz. Disidentification is an alternative to either assimilating to oppressive able-minded, able-bodied, and cis-hetero ideals or counteridentifying1 with them. Instead of assimilating or counteridentifying, folks who choose to disidentify question the “typical understanding of identity categories” (124). Neuroqueer disidentification is a complete rejection of any kind of binaries and exclusions. It would be a hard feat to achieve if I were to explain exactly what that means here because I often doubt my ability to fully grasp the concept myself. However, it is liberatory for me specifically because it tells me that there is “malleability and fluidity” (135) in the experiences of people associated with different social locations and identity intersections. Hence, allowing me to exist in my expression of my fluid identity and social locations, without fear of not belonging.
My neuroatypicality, queerness, and chronic pain have shown me that able-mindedness is inextricably entwined with “conceptions of compulsory able-bodiedness and compulsory [cis]heterosexuality, and how these compulsions permeate every layer of social life” (129). At the same time, the conception of normative bodyminds coalesces with caste, class, white supremacy, colonialism, and masculinity. For me, neuroqueerness is “queering” and “cripping” (re: challenging/subverting) dominant notions of identity categories of bodyminds. I employ a neuroqueer politic by disidentification and rejection of the biomedical notions of pathology and defectiveness of certain bodyminds, desires, and practices. I neither assimilate nor counteridentify, I just exist. This does not give me the ability to dust off the knowledge and recognition of my privileged positions. Instead, it opens up space to have uncomfortable but necessary conversations about privilege and accessibility with others.
It was yet another exhausting day today. I cried at least three times about seven different ways my social position either triggered past trauma or added another layer to the sedimented grief accumulated over the years. I also willingly and happily used some of my spoons to provide mutual aid to friends and strangers. I found joy in holding my partner’s face in my hands. I stimmed freely in the comfort of my room while listening to music. I was able to just “be”. And I hope one day, I find the capacity to exist uninhibited and unmasked in public as well. Until then, I will read more about the pleasure of a neuroqueer politic and do my best to foster spaces that allow everyone such possibilities.
Notes:
- Counteridentification is when “…[some individuals] identify with a marginalized (often) militant counter-cultural group…such opposition often reifies and perpetuates dominant discourses through false binaries” (131).
Gladly Political 