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It Doesn’t Get Better: Online Activism and TMAU Awareness

A parent with the odor-related medical condition trimethylaminuria (TMAU) recently drew attention to an episode of the NetFlix series Word Party titled “The Search for the Stink Monster.” It reportedly teaches children “You’re never stinky as long as you have good hygiene.” By attributing body odor to bad hygiene, this production—which has 1 million views on YouTube alone—actively harms people with TMAU and related disabilities that affect at least 1% of the global population. Reflecting on how impacted communities could respond, I was reminded of how effectively activists with other disabilities used social media to protest ableist representations in the children’s film The Witches. Why, I wondered, can’t something like that be done to raise awareness about TMAU?

 

Social media platforms’ profit-driven failure to weed out hateful, abusive content has turned them into dangerous spaces for users from oppressed groups. Search engine algorithms have been found to reinforce stereotypes of disabled people as welfare scroungers or objects of pity. Olfactory hatred is a particularly vicious component of online ableism. It makes the internet a hostile environment for writers, like myself, and activists, struggling to show how common assumptions about odor negatively affect people with TMAU and similar conditions.

 

Most efforts to raise awareness about TMAU are met with indifference or abuse. So it’s surprising that many disabled activists, whose reflections on social media usage that I’ve encountered readily acknowledge ableist internet culture, present online activism as a promising way to change that culture. “Until we see ourselves represented in mainstream media and the business world we won’t feel like we truly belong. And when we don’t feel like we belong, we can’t feel pride,” explains one celebration of disabled social media influencers. Without discounting online ableism, many disabled social media users affirm their power to “promote awareness and activism.”

 

While individual acts of bullying and the more systemic ableist internet culture are identified as concerns, a dominant narrative seems to be emerging that 1) the more labor that activists invest in social media use, the higher the audience engagement and 2) online hostility is a manageable obstacle that disabled activists can be expected to navigate and survive through personal resilience techniques.

 

Both beliefs fly in the face of what disabled activists for TMAU and related conditions experience online. The powerful taboo that still surrounds bodily functions like odor even within the disability community, let alone outside of it, may explain our disappointing outcomes. Yet stigma makes it easy for this obstacle to go unmentioned, inviting the verdict that we’re just not trying hard enough.

 

Ableist assumptions about odor collude with internalized hatred, adding up to massive barriers that keep TMAU inconspicuous within activist spaces. These barriers cannot be surmounted by individual effort alone. I urge the disability community to avoid a triumphalist progress story which celebrates distinguished members’ accomplishments while leaving other members in obscurity.

 

Activists who want to fight stigma surrounding odor-related disabilities have two main options: use individual social media accounts or get the message out through platforms such as TV and other media. Search for TMAU on YouTube and you’ll bring up dozens of activists’ channels (e.g. Body Odor Sufferers, TMAU Up, etc.). Raw and uncensored, these allow individuals to talk about problems endemic to the TMAU community like discrimination, isolation, and suicide. However, the modest number of subscribers and the content of comments suggests that accounts like these are of interest mainly to other people within the TMAU community.

 

While they are important lifelines for connecting individuals going through similar experiences, they don’t reach the audiences whose ignorance and hatred fuel oppression. To engage mainstream audiences, activists have little choice but to pursue features in media such as TV and news articles. This strategy gains visibility for TMAU, but has the disadvantage of subjecting activists’ narratives to framing by gatekeepers like journalists and doctors, whose language can function to undermine the goal of destigmatization.

 

Even when gatekeepers don’t explicitly sabotage awareness-raising, activists discover that simply gaining access to a public forum is not sufficient to compel audiences to reexamine their ableist conceptual frameworks. Consider teen activist Alyssa Pursely’s 2021 appearance on Born Different. The show’s producers define it as an opportunity for people with disabilities and other differences to fight stigma. However, while the 3,500 comments left under the YouTube video included thoughtful ones, several negative themes recurred, revealing that an activist briefly given a singular platform cannot overpower deeply entrenched ableist assumptions like the following:

 

Odor-related disabilities result from inadequate self-care.

 

Reproducing a long tradition that subjects disabled people to accusations of fraud and heightened scrutiny, some comments shamed Alyssa for cooking French fries, implying that she doesn’t take care of herself. From the perspective of someone on a low-choline diet—followed by many people with TMAU—there is nothing “wrong” with French fries.

 

But commenters held her up to a higher standard. This is part of a trend of fat antagonistic and healthist discrimination which identifies human worth with supposedly “healthy” lifestyle choices. Scrutiny through the healthist lens invalidates disabled people’s experiences and needs by implicitly or explicitly blaming us for our conditions. It presents solidarity as something which can only be earned by the healthy.

 

Quite a few of the comments contain unsolicited advice to use the deodorant Lume. The multiple references are evidence of how profit-driven deodorant companies succeed in reaching audiences much more effectively than disability activists’ messages do. The former are uncritically accepted as reliable, while activists are assumed to lack awareness.

 

Taken in conjunction with the healthism described above, these comments express a refusal to dismantle ableist assumptions upon learning about an unfamiliar disability. Instead, disabled people are often presented as not doing enough to normalize themselves, implying that odorlessness is just one dietary change or one can of deodorant away.

 

Hatred of body odor is natural and unchangeable.

 

A few of the comments favorably contrasted olfactory hatred with other forms of hatred (like fat antagonism), presenting the former as natural. Others echoed this naturalization of exclusion by expressing inability or refusal to tolerate people with body odor.

 

Even comments which did not explicitly naturalize olfactory hatred advised Alyssa to wait for the medical establishment to discover a cure or to try Lume deodorant or other normalizing techniques. They seem to be rooted in the same core belief that odor-related hatred is non-negotiable.

 

There is no future for people with odor-related disabilities.

 

A large number of comments expressed a wish for Alyssa to have a “normal” future through the discovery of a “cure.” They reiterate the ableist identification of a future worth living with the absence of disability. Or, as Alison Kafer writes in Feminist, Queer, Crip, “The presence of disability…signals something else: a future that bears too many traces of the ills of the present to be desirable. Disability is a future no one wants.” In effect, they deny a future to people with TMAU and other physical disabilities unless they covet normalcy.

 

They situate Alyssa’s present self in a state of limbo. The concrete reality of bullying is mystified and displaced by superimposing a hypothetical future in which she would be socially acceptable if cured, reiterating that she is not acceptable now. This absolves the commenters of any accountability to stop the bullying. Comments like these show that simply providing forums like “Born Different” to educate audiences about TMAU is not enough; the new information is being added to preexisting ableist categories without dismantling them.

 

If an activist were to speak from a position of institutional authority—like a tenured professor—would they have a greater impact on changing audiences’ minds? Possibly. But systematic discrimination at every level of institutional gatekeeping prevents disabled people who are trying to change the hegemonic narrative about odor conditions from ever gaining such validation at significant levels. I’ve repeatedly gotten my hopes up when, after months of silence, a previous submission is accepted by peer reviewers, only to find the challenges that my work poses ignored after publication. I rarely elicit ableist comments like Alyssa did. Instead, I get complete silence.

 

Leaving it to individual activists to educate the public is not just ineffective, it also puts some at severe emotional risk. Most people with TMAU experience intense mental distress from past or ongoing harassment. As one YouTuber explains, “Suffering with this condition can really have you feeling less than a human. It can take away some parts of your humanity, just because of the strife that you encounter on a day-to-day basis from people who just find your being, just your being, offensive.” Because ignorance about TMAU is the norm, people with odor-related disabilities have no physical safe spaces to recover from harassment.

 

One complaint from a neighbor, coworker, or stranger can result in eviction from rental housing, termination from a job, or removal from public spaces. Online forums and closed social media groups offer virtual refuge, but the physical body remains vulnerable to the omnipresent threat of being defined as a nuisance and spatially excluded. Posts about suicidal ideation and attempts are extremely frequent on TMAU forums. Speaking publicly about bullying invites exposure to more bullying, which could make activists’ mental distress spiral out of control. 

 

I’ve tried to describe a frustrating impasse reached by myself and other people educating about TMAU. We aspire to be effective like prominent activists representing other disabilities, and we’re assured that the internet is an ideal venue for such destigmatizing work. Yet we’re not getting the right people’s attention, and we’re left to blame ourselves. Perhaps one way to make sense of this impasse is to draw on comparable experiences within the queer community.

 

For example, the progress narrative contained in the “It Gets Better” project launched by sex advice columnist Dan Savage promised bullied queer teens that homophobic discrimination was no longer a serious obstacle to upward social mobility. This influential message was intended to uplift but, as critics pointed out, it also functions to obscure unequal distribution of opportunities by centering the experiences of white, credentialed, cis gay men. 

 

As disabled activists for TMAU (and other taboo disabilities) who are struggling with self-blame for failing to match the accomplishments of prominent peers, we have much to learn from queer critiques of the “It Gets Better” project. While elation at the success of individual disabled influencers cannot be equated with the way that queer progress narratives privilege “an exceptional class of aspirational gay citizens at the expense of others,” as Jasbir Puar states, several similarities are worth noting. In both queer and disabled progress rhetoric, one subgroup represents its success as attainable to other members of the group through personal initiative, obscuring unequal access to resources. Both progress narratives ignore how the most abjected face much more virulent and frequently intersectional forms of stigma.

 

In both, the achievements of prominent community members are misleadingly presented as sources of comfort and inspiration to other, more disadvantaged members. Both mystify the path to success. Advances made by disabled, queer, and other social justice movements can only be meaningful to people harmed by olfactory discrimination if leaders use their platforms to include references to it, or to uplift TMAU-related activists’ efforts. One recent, hopeful example of such education is influencer and author Blair Imani’s video which teaches that “oppression stinks more than any body.” 

 

It’s not necessary to be a public figure to make a difference. You can dismantle olfactory stereotypes that are encountered in commonplace interactions. For instance, if a friend says “That guy smells like he hasn’t showered in months,” you could point out, “Maybe he has TMAU. People with TMAU, a metabolic condition, can have a noticeable smell despite showering as often as we do.” If kids are a part of your life and you encounter a deodorant ad, teach them that odor-related bullying is as unacceptable as other kinds of bullying. These are just a couple of small-scale yet important acts that challenge the pervasive nature of olfactory discrimination.

 

My hope is that society moves away from a flawed morality in which recognition of individuals’ complexity and worthiness is contingent upon conforming to the norm of odorlessness. One thing is certain though: given the millions of corporate dollars poured into odor-shaming ads and mainstream culture’s deep saturation with their hateful messages, much work remains ahead.

 

 

 

Nat Lazakis (he/they) is an independent researcher who focuses on embodiment and place. His disability study Body Odor and Biopolitics: Characterizing Smell in Neoliberal America (McFarland, 2021) documents socioeconomic barriers faced by people with Trimethylaminuria and related medical conditions. You can find out more about them on their website.

The post It Doesn’t Get Better: Online Activism and TMAU Awareness appeared first on Rooted in Rights.

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Originally published as It Doesn’t Get Better: Online Activism and TMAU Awareness at Rooted in Rights

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