Hello, I’m Shelley Tremain and I’d like to welcome you to the eighth installment of Dialogues on Disability, a series of interviews that I am conducting with disabled philosophers and post here on the third Wednesday of each month. The series is designed to provide a public venue for discussion with disabled philosophers about a range of topics, including their philosophical work on disability; the place of philosophy of disability vis-à-vis the discipline and profession; their experiences of institutional discrimination and personal prejudice in philosophy, in particular, and in academia, more generally; resistance to ableism; accessibility; and anti-oppressive pedagogy.
My guest today is Nancy Stanlick. Nancy is Assistant Dean in the College of Arts and Humanities and Professor of Philosophy at the University of Central Florida. She specializes in ethics, social philosophy, and history of modern and American philosophy. When Nancy isn’t at her job or at home doing job-related things, she plays online video games, works in her yard, reads, and watches old movies. She also enjoys her cats and sleeping in late on Saturdays.
Welcome to Dialogues on Disability, Nancy! Let’s start with your academic background. Tell us what brought you to professional philosophy.
Throughout my life, even as a child, I have wondered “why” about pretty much everything. When kids ask “why?” they're often told “because I said so” or “that's just the way it is.” I was never happy with those answers. On one occasion in high school, I was sent to the principal's office because I had asked my teacher too many questions. That just led to more questions. The attempt to scare me into submitting to “the facts”—whatever they were—just didn't work. I'm glad that it didn't. When I was fifteen, I read Mill's On Liberty and Hobbes's Leviathan and, from then on, I knew that I wanted to be a university professor and work in an area dealing with ethics, social and political issues, and the history of ideas. I received the Ph.D. in philosophy from the University of South Florida.
The Presidential Address that you delivered to the Florida Philosophical Association was entitled “Gratitude, Disability, and Philosophy.” What themes did you raise in your address to the FPA?
My presidential address and the addresses of other past presidents of the FPA are at the website of the Florida Philosophical Review. In my address to the FPA, I considered the notion of disability, broadly construed, and related it to how academic philosophy and the humanities, generally, are treated like a disability to be removed or conquered. People who haven’t experienced disability typically don't understand two things. First, they don’t understand that the conditions of life that they regard as “physical disabilities” are part of who some people are; and second, they don’t understand that people who are disabled have valuable contributions to make. The same is true for philosophy and the humanities, generally. People who don't understand what philosophy is or how philosophy is beneficial to society and humanity, on the whole, may seek to remove it, to underfund it, and to ignore it; they may consider other things more important, more beneficial, and more “productive,” than philosophy. So, there's a stigma attached to philosophy and there's a stigma attached to disability; but, in both cases, the stigma is usually only recognized and understood or, at least, best recognized and best understood, only by people who have experience with disability, in the first case, and experience of philosophy, in the second case. In the FPA address, I did what I usually do in most contexts: I made my argument somewhat humorous. In this case, I did so by using the “Rudolph the Red-Nosed Reindeer” Christmas story as the backdrop for understanding how disability, as supposed uselessness, or as impracticality, or as source of embarrassment—like Rudolph's nose—can be shown to be valuable and good.
One of your research aims for the future is to inquire more deeply into issues surrounding “invisible” disability and, in particular, what you call “unspeakable” disability. To what does your term unspeakable disability refer? And, what motivates you to do this research?
The “disability” that is now part of who I am, that is, being a disabled person, has allowed me to see, understand, and feel the effects of social attitudes toward “difference” that I would probably never have understood so clearly if I had not become a disabled person. My interest in “invisible” and “unspeakable” disability is a personal one that derives from the fact that my disability is normally invisible and generally unspeakable, that is, other people can’t see it and most people don’t want to talk about things related to it. I hope to shed some light on disabilities like mine that are unspeakable and invisible in order to help other people who are in similar circumstances. I'd also like to understand more about disability generally, about the social reactions to a disability like mine, and about how to change the negative perceptions and stereotypes about digestive diseases and conditions that sometimes lead to the necessity of a colostomy or ileostomy. I have a colostomy because my colon twisted after a section of it was removed due to diverticulitis. Combatting the social stigma and prejudice associated with an atypical means of bodily waste removal is important to me and it should be to other people too: the need for an ostomy could happen to anyone, at any time.
My first experience of the stigma and prejudice associated with atypical forms of bodily waste removal occurred almost immediately after I got out of the hospital from my ostomy surgery. Shortly after I returned home, a home health-care nurse called my house to arrange an appointment. When she found out that I have a colostomy, she told me that she couldn't handle that—she actually said “eewww”—and called someone else to come to my house. Fortunately, this second nurse had lots of experience with ostomies, taught me how to deal with my colostomy, and how to view it differently than the way that the first home health-care nurse had regarded it. Another nurse told me that she didn't believe that I have a colostomy because, at the time, I was wearing tight jeans. No one with a colostomy can wear “normal” clothes, she said. I wear the same things that other people wear. People tend to think that if you have an ostomy, you have to wear big tent-like dresses, sweatpants, baggy clothes, tunic shirts, or whatever, to hide it. It's not like it is a balloon. In fact, for many of us with colostomies (but, unfortunately, not for everyone with ileostomies), there usually is nothing in “the bag” at all. It simply sits flat against one’s skin, under one's clothing.
Often, we become targets of scorn and derision when people find out about our ostomies. Various people who learned that I have a colostomy have stood directly in front of me and asked whether I stink. This question is interesting and exasperating since, if a person is standing near me and smells nothing, then I think the answer is pretty clear: “No, I don't stink.” Medical equipment for an ostomy—which is more than the stereotypical “bag”—is very advanced and any odor from bodily waste is, in almost every case, completely contained by the equipment. Unlike people with “normal” digestive systems, I can pass gas with reckless abandon and, given that “the bag” has a charcoal filter, nobody can smell anything. A few times, people have actually backed away from me when they hear—I mean that literally, since noises from gas are completely uncontrollable with a colostomy—that I have an ostomy. I have yet to figure out this reaction. I amuse myself by thinking that perhaps they fear that I am covered in waste or that waste will get on them. I'm not; and it won't. A couple years ago, I invented my own medical device to muffle the sound, and it works very well, so I’ve not experienced people backing away from me in quite a while.
I know one young woman who experienced severe humiliation when her sister—with whom she shared a bathroom—told her that they could no longer use the same shower because the woman that I know might “drop crap” on the shower floor. Another woman that I know was not allowed to use the bathroom in her brother and sister-in-law's house because the sister-in-law feared that she would not be able to remove the smell after my acquaintance used it. I know a woman with rectal cancer whose grandson, with whom she lives, regularly tells her that every time she changes her appliance and pouch in the bathroom, she makes the room stink. I doubt that he leaves their bathroom smelling like lilacs or a spring meadow after he has used the toilet.
A number of people have boldly asked me how I “can stand to walk around with a bag of sh**.” What the people who ask such things don't consider is that they too walk around with a bag of it; they walk around with it internally. It's called their intestines and rectum and unless they’ve done bowel prep, they are always walking around with waste in their bodies. I have to admit: I derive a kind of perverse joy from pointing out this fact to people who have such delicate sensibilities that they think that theirs doesn't stink.
A couple years ago one of our students died from complications related to a digestive disease. His friends spoke in hushed tones about his “condition,” said that he didn't like to talk about it, that he'd had a very serious surgery, that he probably “pooped in a bag,” and that he just wanted to be normal like everyone else. At a memorial service that the students arranged for him, the student who had coordinated it asked whether any faculty members wanted to say anything. So, I got up and told the students briefly that I could understand what the student had gone through and that one way in which we could honor his memory would be to bring more information to light about digestive diseases and conditions, about the importance of getting colonoscopies on a regular schedule, and the importance of caring for, and caring about, people with digestive diseases. I very briefly told the students about my surgery, that I have a colostomy, and that there are many people with Crohn's Disease and colitis, for example, who may very well end up with a colostomy or ileostomy one day. I wanted the students to know, first, that it is much better to have an ostomy than to be very sick or dead and, second, that I know many people who are glad to have the chance to live a good and healthy life with an ostomy, rather than to be very sick or dead without one.
My brief three-minute speech met with dead silence. Then, a minute or so later, the student who had coordinated the memorial service ended it by saying that Jake never talked about his condition and that, out of respect for him, no one else would talk about it either because it is embarrassing. I left the room speechless, insulted, and disappointed. Later that week, at the student's funeral, one of our other students came up to me and said that she didn't agree that Jake’s condition was an embarrassment and something not to talk about and, furthermore, that she had appreciated what I said, especially since, she explained, she has Crohn's Disease. She was careful to point out, however, that she hadn’t told any of the other students about her disease and hoped that I would keep it quiet. I did keep her condition quiet, never saying a word about it to anyone. But, I continue to talk about my condition and ostomy when it is appropriate to do so. Not to talk about them, or to talk about them in ways that suggest that they shouldn’t be talked about, would perpetuate the perception that digestive diseases and ostomies are unspeakable disabilities, that they should be kept hidden and secret, and that they are an embarrassment. Why should that be so?
Even the Centers for Disease Control—the CDC—is complicit in spreading false stereotypes about ostomies, such as in their recent, ubiquitous, and faintly annoying anti-smoking advertisement in which a woman with a colostomy claims that anyone with a colostomy needs a good sense of humor and won't be able to go anywhere or do “normal” things: their lives will be ruined. The United Ostomy Associations of America and Uncover Ostomy: Spreading Positive Ostomy Awareness launched a complaint in response to that commercial, which eventually led the CDC to edit it.
October 3rd was World Ostomy Day. It was “celebrated” with a five-kilometer run in only three places in the entire United States: one in each of North Carolina, Tennessee, and Oregon. The closest event to me in recognition of World Ostomy Day was over ten hours away from where I live. Thousands of people walk or run for heart disease, for Alzheimer's, and for breast cancer. Not for colons, small intestines, and ostomies. Let's face it. Crap isn't popular. Breasts are visible to everyone and people generally like them. Alzheimer's affects so many people, both caregivers and people with Alzheimer’s. Heart disease kills thousands every year. These conditions and diseases are visible; they are speakable. But digestive diseases and ostomies are neither visible, nor speakable.
In short, much of the “disability” that accrues to people who have ostomies stems from ignorance, lack of interest, or embarrassment, that is, the misinformation and bad attitudes about ostomies are the biggest part of the problem. Even when you asked me to be part of your Dialogues on Disability series, I hesitated. I hadn’t hesitated because I’m embarrassed about my so-called “disability.” I was reluctant because of other people’s reactions to it and their reactions to what I would say about it. Most of the people with whom I work know about my colostomy. So, I asked a few people at work whether they thought that I should do the interview under a pseudonym and not identify UCF. One person pointed out that my interview might, someday, help someone else. Another person thought that most people would respect the fact that I had done this interview and had provided information about colostomies. And, I, myself, thought about how ironic it would be if I agreed to participate in this interview, but asked to remain anonymous: doing so would have played right into the notion that mine is an unspeakable disability.
Nancy, although you have confronted significant misunderstandings and prejudice about your colostomy, you maintain that it has afforded you incredible freedom. Please explain why you feel this sense of freedom.
What many, perhaps most, people don't understand is that ostomies save lives. If you cannot eliminate waste, you will die. It's plain and simple. For people with uncontrolled or uncontrollable Crohn's Disease, Ulcerative Colitis, rectal cancer, anal cancer, colon cancer, or mistakes or complications from abdominal surgeries, it is a life-saving—and often a life-improving—surgery. I know about many people who have an ostomy and live a better life with it than they had lived without it; and, I’m one of them. I know that sounds odd to people who haven't experienced this, but it is often the case that it is true. It is surely not universally the case and, yes, some people who have had an ostomy are miserable. But I strongly believe that a large part of the misery that they experience is caused by the increased disability and forms of discrimination and prejudice that arise from social attitudes, rather than from the ostomy itself.
Two people have told me that they would rather be dead than have a colostomy. I didn't know how to respond to them. In both cases, I replied simply, “Thanks for letting me know.” I suppose that I should have pointed out to them that they had, in effect, told me that my life is not worth living and, in addition, pointed out to them that they're wrong about that. I'm actually healthier now than I was before; and, I’m happy. For many people with digestive diseases that progress severely and require an ostomy or people who, like me, have Irritable Bowel Syndrome (IBS) and diverticulitis—which do not typically require an ostomy—the ostomy actually creates better living conditions than were experienced with the “original equipment” intact.
Many people with Crohn's, colitis, IBS, or Irritable Bowel Disease (IBD) make sure that they know the location of the nearest bathroom, wherever they go, just in case they need to use it in a hurry. Many of these people avoid social situations in which food is involved, or they don’t participate in activities and don’t attend events in case a bathroom won’t be available to them if they need to use it in a hurry. For many of us (though not all of us) with ostomies, it is now possible to eat without pain, to go places and do things that we weren't able to do before the ostomies, to do things that we felt uncomfortable or unsure about doing before the ostomies. Before my colostomy surgery, when I went out to dinner or engaged in other social activities, I either did not eat at all or I would eat very little. If I did eat, I ate things that I knew were “safe,” that is, foods that most likely wouldn't cause immediate or severe digestive distress; sometimes, I would eat what everyone else ate, but leave the event early to go home.
I spent a lot of time in the bathroom, almost every day. I had significant, and sometimes excruciating, pain from diverticulitis or from abdominal cramping, as well as intestinal bleeding. It was a miserable existence that I hid from others for years and years. I also hid it from myself by trying to ignore it. I am now free from all of that. It's no mean achievement. The downside is that I've gained twenty pounds from celebrating the fact that I can eat again, almost everything, in almost all cases, without any significant problems. But even that downside is a freedom.
A specific kind of medically-approved process in which people with colostomies can engage in order to ensure almost complete control over the time and place of any “output” from the colostomy makes the experience of a colostomy somewhat like the experience that a person who has a digestive system without intestinal disease would have. I use that process; so—unless I have the occasional intestinal virus or eat something that I really shouldn't eat—I don't need to worry that the “bag” has anything in it at all. I'm not saying my situation is perfect. In a much more perfect world, I'd have my colon reattached where it ought to be attached. But I'm actually happy with it. I'm not sick and I'm not dead. So, it's all good for those two reasons. I can eat and I can go places, and there's usually nothing that I can't do with a colostomy that people who don’t have colostomies do, except eliminate waste from the same place that they can. Just a few weeks ago I dug most of a fifty-foot ditch in my yard so that I could install a drainage system for run-off water. I’m also painting my house, which includes climbing a ladder, lifting things, moving furniture, and so on.
I want to note that although I can at times paint my house, or dig a ditch, or walk a long distance, it’s not always easy to do so. I can’t lift heavy things or put a lot of strain on the site of the colostomy due to the increased risk of a hernia. Because I had back surgery quite a few years ago, it is sometimes painful to walk long distances. So, I’m interested in issues surrounding disability accommodations and, more specifically, ableist reactions to disability accommodations. Sometimes when a disabled person gets an accommodation, non-differently-abled people react as though the disabled person has asked for, and has received, some form of special treatment that others can’t get, creating an advantage for the disabled person. All that I need, at least so far, is a classroom relatively close to my office. That’s a fairly simple accommodation. Often nondisabled people don’t understand, and perhaps don’t care to understand, about the subtle, as well as the profound, differences that accommodations can make. To use an analogy, in one of my ethics classes, a white male student announced in class that he was opposed to affirmative action because it took away all his advantages. He didn’t see and, at first, couldn’t see, what he had said and what it meant. I think that the case is often the same with respect to disability accommodations. Nondisabled people think that disabled people are infringing on their advantages when they receive accommodations. That’s analogous to threats to the advantages that accrue to people on the basis of age, sex, gender, ethnicity, and race.
On that note, let’s briefly consider ableism and advantages. When nondisabled people use accessible stalls in public restrooms or parking spaces reserved for disabled people, they undermine efforts to increase the participation of disabled people in public life. You have strong views on this matter. Tell our readers and listeners about problems that you have encountered with respect to accessible stalls in public restrooms.
When, on the few occasions that the medical equipment that I use for my colostomy has come loose at work, or when, on the odd occasion, I’ve had to change it, I’ve needed the extra space of an accessible stall in a public restroom to be able to set up new medical equipment to deal with it. Almost always, someone is in the accessible stall applying make-up, changing clothes, or has simply refused to wait for the other stalls to be vacated. People who use canes or wheelchairs or who, like me, have an invisible disability, often wait for long periods of time to be able to use the only facility that we can use. If I have to wait to use the only accessible stall because it is occupied by someone who doesn’t need it, then any period of time to wait is a very unreasonable period of time. The potential result of waiting could be a mess. Fortunately, I don't usually require the accessible stall. Of course, someone might object that, perhaps, not all the people that I think don’t need to use the stalls designed for disabled people are nondisabled; maybe they too have an invisible disability. I should point out, therefore, that I'm referring to situations at work, for example, in which I know that the person who is in the stall designed for disabled people is not disabled. I've seen plenty of people that I know are not disabled go into the accessible stalls. I've heard that the U.K. government issues special keys for accessible restroom facilities and that these facilities are always locked so that only disabled people with these keys can use them. Unfortunately, we don't have such an arrangement in the U.S. Nor, so far as I know, does Canada.
How can philosophers, including feminist philosophers, work against the sorts of prejudicial attitudes and social stigma that people who have colostomies face? What resources do you recommend for this purpose?
I don’t think I have experienced discrimination in my job because of disability. Most of the people in my department know about my colostomy; nearly everyone in the Dean's office knows about it; and quite a few people in the upper administration at UCF know. Since the surgery, I've moved from regular faculty to administration and have been promoted from associate to full professor. On the rare occasions when I need to take sick leave for something associated with the colostomy, or if I stand up during a meeting because of discomfort, or leave the room during a meeting, there are no questions asked. My experiences with some form of discrimination or the unpleasant reactions of other people have occurred outside of work.
But to answer your question directly, I think that frank, clear talk and discussion about disabilities—including disabilities that are unspeakable or embarrassing—ought to be part of the content taught on diversity. It is now commonplace to note that the paradigm “normal” human being is not disabled, is completely rational, is a white, strong, healthy, independent male, and so on. A disability makes me question such assumptions much more acutely than I did before as simply a “woman in philosophy.” Now I am a disabled woman philosopher. The disability comes primarily from social expectations, from other people. Maybe in that sense the existentialist Sartre was correct when he said that “Hell is other people.” Perfection is not the norm. It is an unrealistic and unrealizable expectation in a society obsessed with health, with being thin, building muscles, and going the distance. Most of us are regular people who have health concerns, are not pencil thin, have at least adequate muscles, and simply go as far as we can. Both the disability and stigma that arise from ignorance, silence, shame, and embarrassment within a society that is obsessed with youth and unrealistic ideals of good health, rather than concerned with our relationships to, and acceptance of, each other are among the most severely disabling conditions of our time.
Just as breast cancer is openly discussed and forthright discussions about how to do self-examinations are readily available, there ought to be straightforward discussions about the need for regular colonoscopies, about why it is important to seek medical treatment for violent and painful experiences with waste elimination, and about the removal of the stigma and embarrassment associated with bodily waste. Conditions like erectile dysfunction are vividly and prominently discussed in television commercials. Although it is very rare to see a commercial about ostomy supplies, there are in fact some ads for self-catheterization, bladder control, and adult underwear, and a few about Crohn's Disease; but, these commercials are primarily shown late at night. Poop just isn't popular.
We conceal our discomfort about human waste removal with jokes about it when we're young and snicker about it when we're older. Quite a few people have told me that although they have wanted to ask me things about a colostomy, they were uncomfortable doing so and embarrassed about it. A few have said that they thought I'd be embarrassed about it. If I were embarrassed about it, I surely wouldn't be talking to you about it in a very public forum like this one. It's O.K. with me. If this interview helps one person or makes someone realize that it's better to have a digestive condition checked by a doctor than to risk death, then it's all worth it to me. It's time to remove digestive conditions and other such invisible disabilities from the realm of the unspeakable.
Earlier this month, The Chronicle published “Dean with a Bag” by George Justice, who is Dean of Humanities and Associate Vice President for Humanities and Arts at Arizona State University. In the article, Justice describes his return to work “with a bag” after ileostomy surgery. Generally speaking, the United Ostomy Associations of America website and the Uncover Ostomy: Spreading Positive Ostomy Awareness website are very good sources of online information about digestive diseases and ostomies. At the United Ostomy Associations site, there is a free and anonymous discussion board for people with ostomies and people with questions about them.
Great. I’d like to encourage our readers and listeners to also check out the So Bad Ass website and blog created by U.K.-based feminist photographer, writer, and public speaker Sam Cleasby. Among other things, the website/blog includes Cleasby’s writing about disability, body image, ileostomy, and stigma; an uncaptioned video of a presentation about colitis, body image, stoma, and self-esteem that Cleasby gave on International Women’s Day; as well as a collection of black and white photos of Cleasby, including quite a number in which Cleasby displays her ileostomy bag.
Nancy, I would like to thank you for your pressing and very informative remarks in this interview. You have raised a number of provocative political, ethical, institutional, and theoretical issues on which feminist and other philosophers should reflect and act.
Readers/listeners are invited to use the Comments section below to respond to Nancy Stanlick’s remarks, ask questions, and so on. Comments will be moderated. As always, although signed comments are encouraged and preferred, anonymous comments may be permitted. Enthusiastic thanks to Bryce Huebner who, once again, generously provided technical assistance with the production of this interview.
Addendum: In the comments below, Thomas Gimbel points out that in Japan the sign to designate accessible restrooms welcomes "ostomates." Thanks to Thomas for emailing me this photo. Image description provided below the photo.
[Image description: the photo shows a camel-coloured panel on a brick wall to the left of an open sliding door. There is a long, vertically-positioned stainless steel handle on the door. The panel depicts (from left to right) the standard wheelchair symbol for accessibility, the traditional symbols for "Men's" and "Women's" washrooms, and below these symbols, a symbol for an "ostomate," and a symbol of someone who, lying down, is receiving assistance from another person. On two white signs below the symbols, additional information is provided in several languages with red and black typeface.]
Please join me here again on Wednesday, December 16th at 8 a.m. ET for the ninth installment of the Dialogues on Disability series and, indeed, on every third Wednesday of the months ahead. I have a fabulous line-up of interviews planned. If you would like to nominate someone to be interviewed (self-nominations are welcomed), please feel free to write me at firstname.lastname@example.org. I prioritize diversity with respect to disability, class, race, gender, institutional status, culture, age, and sexuality in my selection of interviewees and my scheduling of interviews.