The purpose of this blog is to map a journey to change dominant narratives about disabilities like Trimethylaminuria (TMAU). The locked doors. The shiny rainbow slogans beckoning from wide-open gates leading nowhere. The distant glimmer that could be the end of the tunnel or the headlights of an approaching train.
Even if it had a familiar destination –a culturally valued achievement like getting a job in academia– the journey would still be challenging. But one of this blog’s goals is to show –through a synthesis of my own experiences and others’ critiques of institutions like universities– that spaces which invoke scarcity- and competition-based arguments to silence disability activists are arguably at least as much of a problem as the ableist culture which activists are trying to change. Success for this project, then, is not individual distinction in academia or the art/literary world, but the creation of enduring spaces of materially meaningful solidarity where refusal and/or inability to compete does not entail disposability.
A related intention of this blog is to illustrate the disconnect between knowledge about disability generated in spaces of privilege, and the standpoints of non-elites with conditions like TMAU. In my book, I discussed how universities produce a spectrum of discourse which affects people with TMAU in at least four different ways, all of them problematic: they are demonized by evolutionary psychologists, pathologized by physicians, erased by most historians, and offered a sort of “do-it-yourself rainbow-washing” by fields like queer studies. Evolutionary psychology legitimizes discrimination against strong-smelling people as “disease avoidance” (even in the case of non-contagious conditions like TMAU). In line with its approach toward other disabilities, medical research defines TMAU as an abnormality to be cured. Studies of the emergence of modern hygiene leave out the fact that disabilities like TMAU prevent around 1% of humans from making their bodies odorless; this omission allows the norm of odorlessness to appear as an inevitable and innocuous step forward in the so-called civilizing process. Fields like disability studies and queer studies push back, at least nominally, against norms of bodily control by celebrating transgression, leakiness, and queer failure –concepts which in principle could be deployed to challenge odor-related discrimination. But as noted in my book, these theories rarely take into account “the much higher risks assumed by non-elites who either intentionally participate in such body politics or experience discrimination because their bodies involuntarily violate norms of respectability” (p. 111). The blog will critique academic texts, demonstrating how at its most dehumanizing, academic discourse enables violence against people with odor-related disabilities, while its more euphemistic body-positive articulations are unhelpful in real-life situations faced by people with TMAU.
A more general purpose of this blog is to decenter the ivory tower and illuminate the underrepresented context of non-privileged people trying to survive and fight discrimination. Posts will document how different hierarchies reinforce each other in the day-to-day lives of non-elites, creating an impasse for agents who want to resist multiple forms of exclusion. Public conversations about social justice recognize, for instance, that elitism as well as cis-heteronormativity, racism, sexism, ableism, sizeism are all oppressive. But what happens in practice when someone decides to be a traitor not only to body-related norms, but also to the elitist imperative to compete against others? The risks of bodily non-conformity grow when one is not actively compensating for it by amassing social capital. In particular, the refusal to pursue distinction within a competitive career path drastically reduces opportunities to engage audiences about body-related politics. They are told, “Yes, go ahead: defy straightness, ableism, racism, sizeism –but be loyal to norms of upward social mobility, competition, and scarcity; otherwise, you’re not worth listening to.”
The blog aims, then, to define a standpoint outside of the vicious circle of body-related hatred and elitist exclusion, and reflects on how that standpoint could become meaningful in real time and space.
All opinions expressed here are my own, and are not intended to represent the TMAU community or any disability-related organization. Also, posts may refer for the sake of simplicity to “people with TMAU” or “the TMAU community,” but unless otherwise specified, the arguments also apply to individuals with less-researched odor-related conditions such as IMBS, as well as people who have not (yet) obtained a diagnosis due to barriers in accessing healthcare, uninformed physicians, or flaws in the current TMAU testing protocol.