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.