Employees with TMAU speak out

The internet is full of articles, social media posts, and videos shaming employees who have any noticeable body odor. Often published in the form of advice by self-described experts addressing company managers, this material perpetuates medically inaccurate assumptions about the causes of odor, erases disabilities like TMAU, and legitimizes odor-related discrimination in workplaces.

It comes as a refreshing change, then, to read a new article about odor in the workplace which, for once, centers the standpoints of victims rather than perpetrators of olfactory discrimination. The article interviews people with TMAU, three employees and one university student, highlighting experiences familiar to workers with TMAU across the globe. These include disrespect, bullying, and non-meritocratic treatment. Echoing a theme common within the TMAU community, one of the interviewees describes giving up his intended professional career and switching to a delivery job, where he’s “on the road most of the time” and therefore has “little interaction with colleagues and customers.” 

The interviewees’ narratives are a reminder that people with TMAU continue to suffer explicit, unapologetic forms of discrimination. This distances them from a pattern, described by employees with other kinds of disability, in which crude ableist harassment is increasingly being replaced by more subtle types of marginalization. In a recent piece on disability-inclusive workplaces, for instance, a disabled employee illustrates this change by quoting a conversation with a colleague: ““People don’t make fun of us anymore,” I said. She smiled and replied, “They just ignore us.”” This trend should not be understood as an improvement, since disabled employees continue to be objectified and treated as inferior in new ways. Still, the persistence of overt bullying toward TMAU demonstrates that to the modest degree that ableist workplace cultures are becoming conscious of the need to at least pay lip service to inclusion of disabled workers, this shift in management style is currently not being applied to TMAU

The experiences of employees with TMAU also highlight the limits of present-day definitions of worker solidarity. The US, for instance, has entered a period of remarkable labor activism, with employees in several industries forming unions to push back against low wages and exploitative working conditions; public approval of labor unions is at a record high of 71%. As long as TMAU and related conditions remain invisible within social justice movements, however, employees like the ones discussed here will continue to discover that calls to respect and honor workers’ dignity reference only those who conform to the ableist norm of odorless embodiment.


Remembering Cheryl Fields

Cheryl Fields discusses TMAU (Feb. 14, 2012)

June 10th marks seven years without Cheryl Fields (1967-2015), Community Outreach Director for MEBO. Described by MEBO Founder and Executive Director María de la Torre as “probably the biggest campaigner and pioneer of TMAU awareness,” Cheryl held an MBA and was a Doctoral Candidate in Human Resources Management. She worked as manager and special investigator at the Kansas Human Rights Commission, and adjunct professor at Johnson County Community College, among other positions. She played a key role in shaping the culture of TMAU organizing in the years when social media began to enable people previously isolated by the medical establishment’s ignorance about odor-related conditions to come together and form patient advocacy groups like MEBO, and support networks like RareConnect’s TMAU forum.

Cheryl believed in the power of teaching to dispel prejudice. “If one person learns about TMAU, that will be one less person that is uneducated about TMAU. Maybe one less joke, one less nasty comment, one less rejection?” she wrote in 2012. Sharing her own experiences with TMAU, she sought opportunities (like this Topeka-Capital Journal article) to challenge the dominant, ableist narrative of body odor as evidence of bad hygiene. The potential of publicity campaigns to dismantle stigma may seem obvious to activists representing other types of disability. Within the TMAU community it remains a radical idea, given how many have internalized the view that olfactory discrimination is “natural” and unchangeable.

To people who resigned themselves to the fatalistic belief that odor-related hatred is inevitable, Cheryl pointed out that other, more familiar forms of oppression also used to be dismissed as “too big to fight.” She located the exclusions faced by people with TMAU within civil rights, LGBTQ+ rights and disability rights traditions:

“It was a few years ago employers were being sued because they didn’t hire anyone they perceived gay or transgender, because in the 1980’s they thought these employees would bring AIDS to the workplace and the work culture/environment would be ruined? It was during the civil rights era (1954-1963) in the US, where it was actually unlawful to a certain point to even THINK about hiring anyone who was black, African American, or “colored” back then, as the thinking at the time was the work place would be ruined or upset and people would have “panic” attacks by hiring co-workers/peers who were black or African American!

Oh by the way, all of the cases I have stated were thought to be very “WEAK” and even “INSANE” at the time, but history tells us different. Change is slow and takes a continual battle. There are probably more examples many of you may have to share, I just wanted to share a few in this post.

The point is someone has to take a stand for causes, issues, or equal rights.Just because something is one way, does not mean that it has to stay that way. Thank goodness the late Rosa Parks (December 4, 1955) sat down on the bus in 1955, because of her courageous efforts, I am able to STAND UP and fight for the causes I believe in.”

Cheryl Fields, “Our Background and Philosophy” (April 14, 2012)

Her efforts to identify continuities and build bridges between activist movements were rooted in hope that people concerned about other forms of injustice would –if educated– support the TMAU community. One instance that sheds light on how she tried to make allies out of activists already devoted to other social justice issues was her attempt in 2012 “to reach out to SPLC [Southern Poverty Law Center] to gain legal and teaching tolerance support to promote our raising awareness cause.” She intended “to establish relations with persons dedicated to equal rights” and convince them to include TMAU-related discrimination in their “Teaching Tolerance program, which “produces and distributes – free of charge – documentary films, books, lesson plans and other materials that promote tolerance and respect in our nation’s schools.””

Cheryl drew on her professional experience in the human resources field to provide employment advice to the TMAU community. She offered presentations at MEBO’s meetups and via webinar including resume tips and “on-the-job and work environment issues.” Like most other people with TMAU, she was no stranger to employment discrimination, as described in a Change.org petition she and a group of supporters launched to protest Milwaukee Area Technical College’s ableist hiring committee. She found evidence of discrimination in a then-publicly available recording of the committee deciding against interviewing her by citing her TMAU symptoms and public role in TMAU-related activism. The petition stated:

If the person has an aspect of their disability that they cannot easily control, they should not be penalized for that aspect of their being and should be allowed to work and earn a living.  People with disabilities have to and need to work and have a right to work.”

Hire Dr. Cheryl Fields, Disabilities & All!

While Cheryl asserted that people with TMAU have the right to work, she recognized that many might be too traumatized from chronic bullying to seek or keep jobs. As she wrote in 2012,

“I just spoke with a lady today who had a job interview and of course because of the TMAU, she hurried out the door, without the interview even being conducted, she had applied for a Federal Government job. This is so sad.

We will NOT take this laying down. We have a right to work, or to apply for and/or receive SSA disability benefits, we have a right to be interviewed and to be hired for positions for which we are qualified for, etc.”

Therefore, she played a leading role in MEBO’s campaign to convince the Social Security Administration to recognize “TMAU as one of the most disabling rare diseases so that those who have them qualify for expedite[d] review of applications for Social Security Disability assistance.” As Cheryl noted,

“The Social Security Administration (SSA), considers TMAU a “severe impairment” listed under section 5.05 in SSA impairments. However; SSA will not grant a disability payment on TMAU alone, rather there needs to be a “mental” disorder as well.”

Webinar : Social Security Administration’s Compassionate Allowances initiative

Generous with her time and empathy, it was common for Cheryl to accept phone calls from distressed members of the TMAU community at all hours of the day and night. Even when an illness in 2012 prevented her from responding to emails, she provided her hospital room’s phone number on a community blog so that anyone in need could reach her! Considering how many people with TMAU are dragged into the vicious cycle of olfactory discrimination leading to suicidal thoughts, Cheryl’s being present for others undoubtedly saved lives. Accomplishments like this may not be quantifiable, or fit into mainstream media stereotypes of heroism, but are characteristic of what has been described as a tradition of disabled mutual aid: “the small, low-key things we do, in the crip genius ways we do them with ease without abled panic are the opposite of nothing. They are everything.”

I never met Cheryl. Ironically, it was in the summer of 2015 –just weeks after she passed away– that my own initial (and long overdue) encounter with Disability Studies opened up before me the previously unimagined possibility of reconceptualizing olfactory hatred from a constant of human nature into an object of critical, justice-centered research. Her posts, including those quoted above, are among the very few traces that I’ve found of other people who have seen some value in trying to use critical reason against the hegemonic, ableist culture of odor-shaming. I’m grateful for her committed work, and hope that one day, as Cheryl envisioned, the struggle by people with TMAU for justice in the workplace, transportation, housing, and public discourse will earn the solidarity of other progressive movements. Maybe then she’ll finally receive the recognition she deserves.

Beyond awareness-raising

This blog’s introductory post argued that disability activism for TMAU and similar conditions needs to go beyond raising awareness within existing institutions: it must also critically engage institutional cultures of scarcity and competition. “If you want to educate people about TMAU,” readers might object, “just focus on that message. What do scarcity and competition have to do with it?” The answer is that activists for TMAU (and other disabilities) are being turned away from spaces they attempt to raise awareness within through some variation on the argument that “We’re ignoring you not because we’re ableist, but because you’re not competitively distinguished enough to be worth listening to.” This displaces attention away from TMAU and onto credentials which activists must amass to be considered “worth listening to.” Read on for a concrete example of why an identity-based strategy alone is inadequate.

In 2016 I was searching for opportunities to raise awareness about TMAU. I considered the first try a failure. That was a weekly blog where I explored some themes later developed in my book. According to the WordPress statistics, dozens of people were visiting it, but they weren’t commenting, so I gave up after three months.

Later that year, I submitted a piece of TMAU-related art to a queer-themed, curated group exhibit. Titled Worlds Apart, it featured a pencil drawing of a person’s head, back, and arms ripped vertically into two halves. The paper to the figure’s right was filled with a collage of newspaper clippings documenting growing support for trans people; the paper on the left side contained public library rules and other public documents authorizing spatial exclusion of people with body odor.

It was inspired by a protest I’d attended that spring in Raleigh, NC against conservative governor Pat McCrory’s transphobic “Bathroom Bill.” Expecting a few dozen other trans people to show up, I was astonished by the outpouring of allies from liberal churches, the ACLU, and many other organizations. I hadn’t expected that level of interest and support for a group that’s no larger than 1% of the US population. I wasn’t naive enough to think that just because they supported the 1% trans community, these allies could be easily persuaded to also support other comparably sized minorities (like the TMAU community). But I felt that in coming out to support one small group, they were losing their hold on the argument that other groups of equivalent size were “too small to care about.”

The piece was accepted and displayed in the show (along with around 20 other artists’ work). Did it help increase visibility for TMAU? Overall, the experience was at least as disappointing as the blog, because the artwork did not elicit any comments from viewers, or other expressions of accountability to fight discrimination against people with TMAU. Its visibility was that of the proverbial elephant in the room: something that dozens of visitors must’ve been aware of, but that awareness didn’t lead to any actions such as committing to learn more about TMAU or attempting to make the space that held the exhibit into a more welcoming one for disabled people.

This non-engagement makes sense within two mutually reinforcing contexts, both of which are scarcity-related. One is the context of ableism within queer spaces. As noted in my book, “Queer-identified people with disabilities are often marginalized and devalued within queer spaces (Luczak 2015). Coming out as gay and/or trans can entail exclusion from mainstream support networks, yet within the queer community people are expected to meet material needs on their own, or are held personally responsible for finding a partner, spouse or group of friends with whom to pool resources. The belief that queerness ought to be compartmentalized from other kinds of difference like disability ends up reproducing ableist exclusion within left-wing spaces, and makes it difficult for people with disabilities to form the kind of bonds which are crucial for satisfaction of social and material needs. Within this context of overlapping ableism and classism, the heightened risks and traumas associated with navigating the neoliberal terrain as an individual with an odor-related disability remain completely unacknowledged. To give a concrete example, a visibly queer, working-class person who has TMAU and needs to find a housemate to share the rising cost of rent may struggle to find a straight person (because of homophobia) or a queer person (because of olfactory hatred), leaving them vulnerable to eviction and houselessness” (p. 127). 

The second context is the scarcity-centered culture of competitive art exhibits. Unlike the very few art shows where anyone can participate, competitive shows are curated by one or more gatekeepers who decide which submissions to accept, usually without being accountable for giving any reason for rejections. So even pieces which are created for the purpose of raising awareness about a social issue or identity, once submitted to a competitive show, are vetted based on criteria of artistic “merit” (as defined by the gatekeeper). This displaces attention away from the art piece’s intended message and onto qualities such as “originality of form,” “skilled technique,” and other non-political categories. Processing art by putting it into competition against others’ art teaches audiences to “ignore the elephant” by elevating scarcity-related considerations over the piece’s direct, political message.

Queer spaces’ ableist culture plus competitive art add up to a vicious circle. Ableism privileges queers who show up always-already-effortlessly performing norms considered valuable, such as competitive distinction in academics and employment, or at least financial independence, bodily control, emotional resilience –people who are not “needy” or “burdens.” Individuals who find themselves marginalized within queer communities because of inability and/or refusal to conform to these norms may hope to challenge them through creative work like art. But unfortunately, when the only venue for getting that art noticed by other members of the community is competitive exhibits, the same type of scarcity-based logic that devalues them within the community also prevents their art from being engaged.

An activist solely focused on educating about TMAU would probably read the audience’s non-engagement as a prompt to work harder within existing institutions. For instance, they might blame themselves for taking the risk of speaking openly about a stigmatized disability before amassing much more cultural capital than they have already. They might try to make themselves more competitive as an artist so as to be awarded a solo exhibit in the future (by earning an MFA, attempting to network with influential art-related gatekeepers, self-promoting, etc). There’s a willingness to step into other people’s shoes, make excuses for them, to say “of course they ignored my piece because I’m not famous”; and a critical self-scanning for anything that could be reducing one’s marketability –so if one is eventually allowed to make TMAU visible, it is only after laboring to make themselves “valuable” in whatever ways have been predetermined by competitive institutions.

The lesson I took home from that disappointing art show is the urgent need to create non-hierarchical, non-competitive spaces where anyone can challenge ableist norms without having to wait until their resume is full of degrees, awards, and other markers of scarcity-centered distinction.

“Decentering Neoliberal Knowledge” (Essay)

My essay “Decentering Neoliberal Knowledge: Toward New Learning and Research Spaces” was posted on CNS Web – an online community of red-green activists:


“A central tenet of ecosocialism –contrary to widespread belief that the capitalist market can develop “green” yet lucrative solutions to the environmental crisis– is that degradation of the ecosystem is not a temporary misstep, but essentially bound to capitalism’s relentless elevation of profit over all other values. This essay draws on the writing of André Gorz as well as a range of recent critiques of academia to argue that when people want to study and teach about capitalism’s destruction of the lifeworld, they should be able to do so in spaces of intellectual sociability which are as free as possible of neoliberal norms. Apart from online forums, however, almost no such spaces exist today.” Read more

Image: cover of Les Temps Modernes (April 1970) with “Détruire l’Université” by André Gorz (1923-2007).