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11/18/2015

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Jane Dryden

Thanks for this, Shelley and Nancy! I really enjoyed reading it.

On the topic of unspeakability I thought I'd share two pieces from DSQ that might be relevant (if anyone is interested) -- Cindy LaCom's "Filthy Bodies, Porous Boundaries: The Politics of Shit in Disability Studies" [ http://dsq-sds.org/article/view/11/11 ] and Amy Vidali's "Out of Control: The Rhetoric of Gastrointestinal Disorders" [ http://dsq-sds.org/article/view/1287/1313 ] -- I was reminded of them as I read the piece, even though they don't discuss ostomies specifically.

Shelley Tremain

Jane, thanks very much for directing our attention to these articles. I'm glad you enjoyed the interview.

Nancy Stanlick

Jane, it took me a few minutes to reply so I could read Vidali's article. Those of us with IBS - having a colostomy hasn't changed that even though it is not so bad as it used to be - can surely relate clearly to it. Thank you for posting the links and I am looking forward to reading the second one. People are insulted when I ask what is in something put in front of me to eat. It is uncomfortable to everyone to say it is simply because some things make me much less than a talkative or comfortable guest. And all of this is generally unspeakable. Even my surgeon told me a couple weeks ago that he doesn't really want to hear about crap. And this even when he is the person who created my alternate crap removal system (ACRS, a new acronym!). To him, it is a sign of imperfection. To me, it is not. Thanks again for these references!

Bryce

Nancy, this was a very interesting read. I really like your discussion of freedom, and it's a very interesting approach to conceptualizing some of the complex dynamics that arise between socially entrenched prejudices (and aversions to bodily processes) and the material and social structures we rely on to act. What I found most interesting was how you show that something that can make a person more free differs across different forms of embodiment, and that the assumption that there's one right way to be embodied can yield seriously mistaken assumptions about which kinds of social and material scaffolding can enhance freedom (and which ones will detract from or compromise freedom). There's a lot to think about there! Thank you!

Shelley Tremain

I think Bryce's comment hits upon some of the things about which Nancy's remarks have made me think. In particular, I have repeatedly returned to the place in Nancy's responses in which she notes that a couple of people have told her that they would rather be dead than have a colostomy, how saying so was in effect a declaration about Nancy's life and its disvalue, and how they were wrong about that. It strikes me that Nancy's comments about her new sense of freedom in regard to a situation that (uninformed) others deride could be used as a counterexample to more general arguments about the disvalue of many disabled lives.

Nancy Stanlick

Bryce, thanks for this comment. When you refer to people thinking there is a "right way to be embodied," it is also a commentary on a "right way to be free." A gastroenterologist to whom I am going tomorrow for some check-up work on my "ACRS" couldn't wrap his mind around the fact that I have decided not to risk my life with another surgery (or more than one) to TRY to be "normal" again. For me, it's something of a cost-risk-benefit analysis of the situation. While many can't understand it, I'm more free now than I ever was with all the original intestinal equipment's structuring intact. This is not to say that having an ostomy is just dandy. It's not. And there are some ways in which my life plays out where it is sometimes a hindrance or an annoyance. But isn't much of life like that, anyway?

Andrea Nicki

Excellent read. Thanks for promoting more public understanding of digestive problems.

Nilika Mehrotra

Thanks Shelley and Nancy for this wonderful informative conversation.

Thomas Gimbel

I would also like to thank both of you for raising awareness of ostomates. A little more than three years ago (during my first week of graduate school actually) I had to have the entirety of my large intestine removed due to Chrohn's complications, and after six additional surgeries and a plethora of trying periods, I am now minus a rectum, and about a third of small intestine. Thanks to my ostomy, however, I am finally able to get back to pursuing my Ph.D.

While I am fortunate enough to have not experienced as many absurdly disrespectful incidents as described in the interview, I am keenly aware of the "invisible disability" aspect of the ostomy. One of my personal "favorite" examples of this is the fact that most email and online spell checking software refuse to recognize "ostomy" as a word (neither does typepad, apparently).

One thing that I was reminded of while reading this was the self doubt I had (and frankly still probably harbor) as to wheter other people consider me "truly" disabled (and to what degree that should matter). It took months before I worked up the courage to use a disabled restroom, for example, as I always feared some sort of opprobrium from bystanders who would assume I was doing something akin parking in the handicapped spot illegally (as a random aside to this, I wish other countries would look to the public restroom signs used in Japan, many of which now include a depiction of an ostomate alongside the standard wheelchair disability sign).

Again, thank you for the thought provoking discussion.

Shelley Tremain

Andrea and Nilika, I'm very glad that you enjoyed the interview!

Thomas, thanks so much for your remarks. I know that Nancy will comment soon. In the meantime, however, I'd like to ask if you (or anyone else, for the matter) could get a visual of the accessibility sign you describe and put it in a comment for display here. I'd really like to see what it looks like (I've never been to Japan). As you may know, in recent years, there have been quite a number of critiques of the wheelchair symbol (International Symbol of Accessibility - ISA) for the reason to which you and Nancy refer, as well as for other reasons. In addition, (as you may also know) there is a growing body of critical work in philosophy of disability and disability studies on (what gets called) "invisible disability." I am glad that you liked the interview.

Nancy Stanlick

Andrea, Nilika, and Thomas, thank you for reading and for your replies. I was out of communication for a little while yesterday, so I wanted to apologize for being so late replying. I would also like to see the signs to which Thomas refers. The signs we have here in the U.S. for disability access indicators are themselves somewhat annoying for their depiction of only wheelchair users being disabled and thus only they are "legitimate." On the other hand, there are so many ways in which one may be disabled that it would be impossible to note them all on a sign. When I was talking to a nurse and anesthetist right before the colonoscopy I had yesterday, we were discussing the ignorance and mystery that surrounds digestive and elimination processes, and digestive diseases. They also commented on the lack of awareness, generally. There is also, it seems, a biological reason for the general tendency to avoid not just talking about but even knowing about elimination processes. It may be akin to Mary Midgely's "Yuk Factor" in not just moral evaluation (as she uses it) but also in social and personal contexts of other kinds. Thanks again for the comments. ~Nancy

Shelley Tremain

Kelly Fritsch critiques the ISA (International Symbol of Accessibility) in her article "On the Negative Possibility of Suffering: Adorno, Feminist Philosophy, and the Transfigured Crip to Come," which appeared in _Disability Studies Quarterly_ vol. 33, n. 4, 2013, the special issue that I guest edited. You can read Kelly's article here: http://dsq-sds.org/article/view/3869

m

Thanks for this. Back in 2010 I had my large intestine removed due to untreatable ulcerative colitis (also resulting in dropping out and transferring). I only had an ileostomy for 8 months before I had a surgery to create a j-pouch. But it did alter my life socially (not that I was much social to begin with!) and I have never really told anyone about it since. I still don't like using people's bathrooms (without a large intestine, you go fairly often!) and I leave parties and such early to this day. Perhaps I should get over it, but who knows.

Nancy Stanlick

M, I know of some people who had J pouches who opted for returning to an ileostomy, so it is good to hear that yours has been successful. That is very good, indeed. Before my colostomy, I used to avoid using anyone's bathroom in case some horrible thing would happen, like passing out from pain or intestinal bleeding, or who knows what, or simply being in there for a long time. Now, I don't have to think much about any of it, but I remember quite well avoiding lots of social situations, or cutting them very short. It's a disappointing and annoying thing. People without digestive diseases surely don't know just how much they affect your life. So I understand what you mean about the notion of getting over it, but it is easier said than done. ~Nancy

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