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.