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04/15/2015

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Nick Byrd

Thank you Shelley and Bryce! This was very helpful and compelling. I'm convinced. I'll adjust my future conference planning accordingly. (I might need to contact you guys for insight about finer details when it comes time to plan and announce an event's food options).

Bryce: I appreciate you emphasizing the centrality of food and alcohol to academic culture. You've done well to capture one way that this feature of academic culture, if not handled carefully, can have bad — even if unintended — consequences.

Tony

Nice interview! Lots of useful ideas here.

How do you go about crowd- sourcing a syllabus?

Tony

Bryce

Thanks again, Nick! And yeah, planning on these things can be sort of difficult!

Tony, my standard go-to is to initiate a Facebook comments thread on a syllabus idea or a draft syllabus. I am also fortunate to have many friends that know a whole lot more than I do about disability, anti-racist theory, feminist philosophy, Indian philosophy, Mexica philosophy, and African and Africana philosophy. So I often ask them what to use in a particular class. Once I post my initial draft, I often get a lot of suggestions, and a lot of recommendations for things that I would have never thought about, given my own biases and my own history. So I incorporate, revise, and often solicit suggestions a second time. So far, it's worked beautifully, and I intend to keep doing it!

Anne Collins Smith

Bryce, thank you for sharing your experiences and insights! I was especially struck by how you turned your own ambivalence about celiac disease as a disability into an advantage in terms of problematizing the polarity between disabled/non-disabled.

Joe Stramondo

What a fantastic interview! I think conceptualizing something like Celiac Disease through the lens of disability theory can not only enrich our understanding of that sort of embodiment, but it can also expand, adjust, and sharpen the tools that are used by disability theory itself in ways that are neglected by more paradigmatic cases!

Bryce

Anne and Joe, thanks for the encouraging comments. They both help to bring out some of the things that I really wasn't sure how to say; and they put them in terms that do a much better job than I did.

My thoughts on these two issues are driven my attempt to disrupt essentialist and teleological views of disability, which I think most people fall into, and do so far too easily. When I turn to questions of disability, I often find myself falling into essentialist views, against my better judgment. Such views run contrary to my hardcore Darwinian commitments, and they run contrary to my thinking about the socially situated nature of agency and action. So I'm trying hard to disrupt those tendencies. And doing so really does seem to depend on, 'problematizing the polarity between disabled/non-disabled', and remembering that the full suite of human variation is not captured by a focus on 'more paradigmatic cases' of disability.

Your language on that second point, Joe, is something that I've been thinking about a lot, and it's part of the reason I have been playing with the multidimensional model that I sketched out in the interview (I'm not committed to those being the right dimensions, they're just a gesture in the direction of my way of thinking about things). I think that a lot of people (myself included) have an easy time thinking that disability only shows up where the values of all of the relevant dimensions are turned up to 11. And that being non-disabled is a matter of having all of those values set to 0. That's a superweird hunch, but it seems to be pretty pervasive. By thinking in terms of a multidimensional space, I want to highlight the ways that the values of each dimensions can vary independently, in ways that yield different kinds of embodiment, and different kinds of disadvantages. Thinking about things in this way helps me, at least, to conceptualize disability and non-disability as both within the space of ordinary human variation; and this helps me to remember that neither is more 'ontologically primitive' than the other. I really want to think more about how a picture roughly like than can help to get rid of the intuitions that fund problematic ideologies about ability.

I also want to call attention to Eric Schwitzgebel's comment over at his own blog, which highlights the socially situated nature of disability and disadvantage. He's right to note that celiac disease only yields disadvantages against the backdrop of particular cuisines, and that there are many cuisines where the effects of celiac disease do not even arise. Experiencing this was really eye opening for me. When I visited El D.F. last summer, I was able to adopt a much more casual and less managed way of eating, and that yielded a radically different experience than the one that I have come to structure my life around in D.C. Like Eric, I hope that we can take up a similar point of view on other ways of being disabled; I also hope that more people can start to remember that we can change the structure of our world if we want to!
(cf., http://schwitzsplinters.blogspot.com/2015/04/dialogues-on-disability.html ).

Shelley Tremain

My sincere thanks to everyone who has commented on the interview thus far! I am glad that folks are engaging Bryce in discussion about some of the practical issues that arise from his remarks, as well as some of the conceptual and other philosophical questions he raised. Philosophy really ought to catch up to other disciplines in the humanities with respect to theoretical work on disability!

As readers of this blog know, I have posted a few times about universal design (UD) strategies. In response to Nick's remarks above, it might be useful, then, to think about how UD would be implemented in regard to the accessibility requirements to which Bryce has drawn attention. An approach to accessibility for people with certain dietary requirements that takes UD and its benefits seriously would make a (wide) selection of types of food available at an event (during meal-time and coffee-time), appropriately labelled and arranged, including gluten-free food, non-diary items, vegan and vegetarian items, etc.

Bryce

Shelley, thanks for calling attention to questions about UD in food availability. This is a point where I'm not really sure what to say, and where thinking about things collaboratively and publicly is likely to be a huge advantage. Here's the thing (which I think holds for every person with celiac disease that I know): I'm not going to eat anything that is out in the open, where there is even a marginal risk of cross contamination. The risks are high, the payoffs are low, and the effects of a wrong judgment are bad. Cross-contamination can happen in preparation, but it can also happen in any space where people might drop crumbs, or tough things with crumb-covered hands. So I just avoid eating when it has even the slightest risk of going badly. I don't know what the right way through that is, and I think that it varies from case to case, but it's another thing to keep in mind...

Shelley Tremain

Bryce, I think that the hazards you describe would be avoided if gluten-free foods were available in their own separate containers. I attended a conference last summer at which this was the approach taken. Admittedly, I didn't speak to anyone who ate the gluten-free food that was available, so I don't know if the way the issue was managed was considered adequate. It was a buffet-style arrangement.

Bryce

Shelley, I think that it would also have to be made clear to all of the participants that cross-contamination was an issue, and that they needed to be sensitive to it. I think that if I felt like I could trust the other participants, I would be happy with that. If I didn't I would probably skip the food just to be safe. As one of my colleagues put it (he is also dealing with celiac): "it is not merely an upset stomach or even like a bad case of food poisoning. It is far worse. It can be so debilitating that anyone who has the condition will take what looks to others like rather extraordinary steps to avoid it."

Komarine

Great interview. Thanks for all these interesting thoughts. I'm interested in the food issue. A social centre I sometimes frequent is attended by people with a range of different ethical positions when it comes to food, and the policy there is to go for the lowest common denominator (vegan). Not sure how that might translate for things like celiac.

Shelley Tremain

thanks for your comment, Komarine. I'd love it if Bryce said more about how he is drawing distinctions between disadvantage, discrimination, and disability (the latter construed in the way I defined it in the interview).

Bryce

Kormarine, fortunately it's pretty easy to put things together that are gluten free and vegan. The big changes for me were shifting to corn tortillas and rice rather than bread, and from soy sauce to gluten free tamari.

Shelley, I agree that this is a hard distinction to draw, once you start to treat "disability as socially constituted disadvantage, as systemic, rather than as an acquired, or intrinsic, characteristic of an individual, or property of a person". At least for me, I think that having celiac will always feel like a disadvantage, no matter how the world is organized. There are just so many things that I can't do, and that I would like to do (I would like to be able to eat things that I miss eating, and I would like to be able to enjoy particular kinds of mouth-feel that I will never experience again). I feel similarly about by anomalous color vision, and I think that I have a disadvantage that shows up because I don't see what others see in sunsets or the blooming cheery trees that are currently all over DC (or so I gather). But part of what's interesting to me about celiac is that I experience the things that I cannot eat as a loss of access to experiences that I previously had access to. Intriguingly, I haven't had similar experiences when I have given up various types of food as a matter of choice - in these cases, this didn't feel like a loss because I could always decide to do things different. But when I was forced to give up the vast majority of things that I used to enjoy eating, that felt like a real loss, and I experience it as a disadvantage.

These first personal experiences of disadvantage, however, seem to be at least partially dissociable from the way that others act toward me, and the way that the world is structured to institutionalize patterns of socially discriminatory disadvantage. I think that part of what I am trying to do with that distinction is to note that the things that cause the disadvantages I experience can also be fodder for discrimination. As I noted above, it doesn't feel like celiac is a target of socially entrenched discrimination, though there are plenty of ways in which the structure of my social environment sometimes make it harder for me to move about the world (for the kinds of reasons that Eric Schwitzgebel notes over at his blog). At the end of the day, however, I think that people can decide to take my needs into account, and they can organize the social space in ways that don't put me at risk. That would be much better, structurally speaking, and it would shift the patterns of disadvantage that I experience. But many disadvantages would remain, or so it seems to me now.

I don't know what to make of that, and I don't know whether there are problematic ontological assumptions kicking around in that kind of view. Maybe the problem is that I am just misconstruing the nature of my body, and that my psychology just hasn't caught up with my embodiment. I don't know. I find these sorts of issues philosophically fascinating, and I don't really know what to do with them.

Matt Burstein

This was a great interview -- and the follow up discussion is really thoughtful and interesting. I wonder, though, if some of Bryce's experiences do have an additional element that could be a more socially entrenched disadvantage.

I have in mind my suspicion that the "gluten free" fad has created a misleading sense in people who don't have celiac that celiac isn't really a big deal. My bet is that the uptake of "I have celiac and need special dietary accommodations" is weaker than it would be if the audience heard the claim for what it is: "if you screw this up, I will be debilitated and sick for a long time." There's no "just eat around it" for celiac.

Bryce Huebner

That's exactly right, Matt. Any time I'm eating in a public space, I'm making a decision in favor of "trust them and hope for the best" or "adopt a highly medicalized stance, and describe the effect of microscopic quantities of gluten on the villi of the small intestine". i learned pretty quickly to pick up signals that indicate carefulness, and I always do a lot of research before I consider eating somewhere or with someone that I don't know to be safe. But I think the general consensus is that the gluten free fad has made things significantly more difficult for people with celiac disease.

Anonymous

Bryce, I really like your multi-dimensional, socially-sensitive conception of disability.

One interesting implication for this conception is, I think, this will includes many more ways of embodiment as disability (in a good way) than we usually do: For example, being a non-native speaker in a particular language community will satisfy most of the dimensions you mentions and would count as a disability even if such disability is "temporary, situational, or context-dependent".

This certainly captured my experience: I am a non-native English speaker myself and I've felt "disabled" in the English-speaking philosophy community.

Komarine

I was thinking of lowest common denominator of dietary requirements as a model for universal design for food. The suggestion was supposed to be an alternative to Shelley's idea as a way to overcome the cross contamination worry.

Bryce Huebner

I really like that way of thinking about it, Komarine! Thanks for clarifying.

7:35, That's an interesting point that I hadn't thought about. Thanks for sharing this phenomenological dimension of being a non-native speaker of English in philosophy. This is part of the reason why I want to keep thinking about this way of conceptualizing things. I think you're right that the view I lay out above does open up space for thinking about many things that people don't typically treat as disabilities as disabling. I think there's a lot of value in that, but I also worry that it misses out on something important (I'm not yet sure what). That's why I'm still ambivalent about thinking of celiac as a disability.

Shelley Tremain

Anonymous's comment about an expansive conception of disability should be recognizable to readers of Foucault's work. In Foucault's College de France lectures of 1975-76 (published in English in 2003 as _Society Must Be Defended_), Foucault introduced the idea of "a racism against the abnormal," which is a conception of race that encompasses not only people excluded and discriminated against on the basis of skin colour or culture (what is standardly understood as racism and anti-Semitism), but rather anyone who doesn't conform to a white, Nordic norm, including people typically regarded as "disabled." The conception of racism against the abnormal that Foucault was developing would encompass the form of marginalization that Anonymous has identified. In a review of Ladelle McWhorter's fabulous book _Racism and Sexual Oppression: A Genealogy_ (Indiana, 1999) that appeared in Hypatia, I do a much better job of explaining Foucault's idea of a racism against the abnormal than I have done in this comment. The review can be read here: https://www.academia.edu/5834459/Review_of_The_Faces_of_Intellectual_Disability_Philosophical_Reflections_by_Licia_Carlson_and_Racism_and_Sexual_Oppression_in_Anglo-America_A_Genealogy_by_Ladelle_McWhorter

Andrew Sydlik

Though not discussed much in the article, Bryce mentioned an interest in how disability theory affects issues of agency. I think this is a really productive area and I would love to hear more about this, and perhaps see Bryce or others on this blog address how our ideas of agency need to account for disability and vice versa. I don't know what's out there but my sense is that not much (or enough) has been written about this. For example, can addiction be considered a disability? I think that it is covered under the ADA but ONLY IF the person is not currently using an illegal substance. This poses all kind of messy legal and ethical dilemmas. When we talk about behavioral conditions like addiction, where do we draw the line between voluntary and involuntary action, between consequences of self-directed behavior and compulsory behavior, between personal accountability and social discrimination, between impaired embodiment and criminality? I think these questions can be applied to many situations and conditions, but addiction is the one that comes first to mind.

Some of the same issues come up with stuttering and speech impairments, for example. Christopher Eagle, Marc Shell, and Joshua St. Pierre have written insightfully about this. Like celiac disease, I don't think most people think of addiction or speech impairments when they think disability, and both likely fall into that liminal space that makes them trouble the clear-cut disabled/nondisabled divide, while also problematizing easy notions of agency/non-agency.

Bryce Huebner

Thanks for this comment, Andrew Sydlik! I can't say that I have worked out thoughts about this issue at this point. I am aiming to teach a grad seminar sometime soon that will bring these sorts of questions into play, building on some of my thoughts about learning-theory, attunement, and the socially situated nature of bias. My hunch is that there has been far too great a focus on questions about rationality and free-will in discussions of agency. But I don't have my preferred alternative developed yet—I think there's a lot to learn from disability theorists, and from race theorists, about what agency and freedom really amount to. Recently, I've learned a lot from a paper that Femi Taiwo (the graduate student at UCLA, not the political philosopher at Cornell) is writing about agency and race. But I can't say that I've digested all of his amazing insights yet!

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