Tag Archives: J. Sumerau

When it won’t go away – on managing chronic conditions in the academy

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An important part of the initiation of Write Where It Hurts came from Xan Nowakowski and J. Sumerau’s experiences collaboratively managing chronic conditions in relation to their professional and personal relationships.  Building on Xan’s previous post in this area, in this post J. Sumerau reflects on aspects of managing chronic mental and physical health conditions in hopes of facilitating dialogue about these issues within and beyond the academy.

Although often invisible to the naked eye in social and professional interaction, estimates suggest as much as half the American population live with chronic mental and / or physical health conditions, and must manage such conditions throughout their daily lives. In this post, I reflect on some of my own experiences as one of these people in hopes of facilitating dialogue on this subject.

In so doing, I am seeking to build on the bravery of other scholars who have already addressed experiences with chronic conditions in many ways. Whether we look to recent blog posts (often anonymous) by people exploring, for example, aspects of bipolar conditions, experiences along the autism spectrum, managing dissociative identity disorders, or persistent anxiety, we can already see the silence around chronic conditions beginning to dissipate. I thus seek to contribute to these voices in hopes of continuing to, as DeWelde and Stepnick title their important volume exposing gender inequality in the academy, “disrupting the culture of silence” around chronic conditions in the academy.

To this end, I want to start by noting that on the surface – or from the outside so to speak – I generally appear to be a rather productive scholar. In fact, I regularly encounter people (well meaning, kind and complimentary people, best I can tell) who say things to the effect of “how do you get so much done” or “I wish I was as productive as you” when they realize that I only began graduate study 7 years ago but already have over 30 academic publications. I appreciate the kindness and compliments these people offer me, and I am proud of my work personally and professionally because doing this work is the closest I ever get to feeling like I might fit in somewhere.

I do not, however, note these experiences to boast in any way. Rather, I note these experiences because people might never think of me when they hear about scholars managing extremely painful and difficult chronic conditions. I have regularly heard people at conferences and in other settings assert negative stereotypes about people with enduring mental and physical conditions, which suggest these people are rare (false) and / or that these people are obviously or automatically different or deviant (false) and / or that visibly managing conditions or otherwise these people are somehow less capable than their normatively bodied or mental colleagues (false again). Like many of the scholars I am aware of managing such conditions, my constant struggle to exist is invisible to the casual glance, and still others face similar struggles managing more visible conditions. In both cases, every scholar I have come in contact with who is managing one or more chronic health conditions is at least as competent as any other scholar I have seen and often actually perform well above the average in their fields (Charles Darwin likely being the most famous example).

The mismatch between stereotypes and actual scholars managing chronic conditions is likely familiar to anyone versed in inequalities scholarship. Similar to people stigmatized via normative or dominant notions of race, class, gender, sexualities, and age to name a few, people whose minds and bodies work differently are typically framed as deficient or deviant. We are called diseased instead of simply different, our experiences are called disorders instead of variations, and our abilities are called lesser instead of diverse. In all such cases, we are assaulted for not fitting artificial norms about how human bodies and minds “should work” so that others who benefit from these norms do not have to reevaluate their own mind and body assumptions. As has traditionally been the case, many of us have realized that these patterns will only change if we begin announcing ourselves to the rest of the world and challenging mental and physical ablest assumptions embedded within academic and other social arenas.

To this end, I would like to share some things about my experience managing chronic conditions that I hope people will think about when they assume bodies or minds should be or work in a certain way. While strangers, colleagues, and acquaintances may look me up, meet me at a conference, see me speak, or otherwise come into contact with me, their view will generally be different from the people closest to me. While such people (based on their reactions to date) will likely see my “productivity” or “talent” first and foremost, those closest to me see how little I sleep because my brain won’t stop working, how many hours and days (and even at times weeks) I spend curled up in a ball in the dark because I feel like the world is trying to kill me, how confusing normal or common speaking patterns are to me and how much energy it takes me to have a five minute conversation with another person, scars scattered around my body from the regular times where it feels like my skin is too tight, and the constant headaches I live with and medicate.

The people closest to me also know that I always keep pills and ice packs nearby because I’m always in at least some physical pain due to issues with my legs. They also know that I regularly hear and see things that other people do not, and get used to me randomly having conversations with people and things they cannot see when we’re together. They also understand what its like to get a call from me when I’ve forgotten who I am, when I don’t know where I am, when I’ve gotten lost on the way to work again, when I think they’re dead but I want to check, when I think I’m dead but want to check, or when I can’t figure out how to put on clothes or feed myself. They also have the patience to look after me when, for example, I wander off following something that they can’t see, disappear mentally in the middle of a conversation without realizing it, or ask them if they’re real because I suddenly don’t know. They also understand when I throw out all my spoons because I’m convinced they’re out to hurt me, when I go whole semesters without working on our projects because my brain just won’t work, when something as simple as going to the grocery store terrifies me or tires me out emotionally, or when I just can’t interact at all for a while and need to be completely alone in silence or with music.

The people closest to me also are not surprised when I don’t buy shoes with laces because they already know that while I can memorize books I can’t tie shoelaces. They are not surprised (and often kindly try to protect me) when the thought of anyone being behind me terrifies me, when human contact makes me literally sick to my stomach (a wonderful example was a friend at a conference who once made controversial statements each time someone went to shake my hand so they would be distracted and I wouldn’t have to explain why I was not going to touch them), or when I have trouble even breathing in a large group of people (even people I like and care about) because I feel like the presence of others is suffocating me. They can even explain to other people why I spend so much time outside since sometimes walls feel like cages, why its much better to contact me online where I don’t have to talk to or see anyone, or how I might shift from the most hyper person they’ve ever met to the most comatose person they’ve ever met within a few minutes.

As you can probably tell, the people closest to me are wonderful people who make a very difficult world more comfortable for me in numerous ways. I find myself appreciating them more than words can say every moment I’m conscious, and without their efforts every aspect of my life other than writing would be much more difficult because I work in a profession where who you know, networking, and other social interaction skills are often just as and / or far more important to careers than how productive you are. This was a hard lesson for me when I arrived in the academy because I can write 10 or more solid articles in a semester but I will never know what to say at a mixer or conference surrounded by frightening strangers. This is all the more important because the conditions that facilitate the above examples are not likely to ever go away, and thus an academy based on the ability to “make small talk with the right people” automatically disadvantages me no matter how good a researcher I am or become.

I am able and willing to share these aspects of my experience, however, because in many ways I have been lucky enough to receive incredible emotional and instrumental support throughout my time in the academy. The people closest to me and especially my life partner, for example, are very understanding and protective of me, and many of them have the resources to protect me even if my disclosure leads other to stigmatize me in some regard. Likewise, I am incredibly productive because, as Matt Damon’s character says in Good Will Hunting, when it comes to research and writing – I can just play. I might not be able to do most of the things normatively bodied and minded people do so easily every day, but I write on as high a level and as fast as anyone I have ever met. The same things that make most of social life so hard for me provide me with abilities that are perfectly suited to the scholarship part of an academic career (i.e., I can read a book in an hour and memorize it, cite findings from years past off the top of my head, take apart anything I read or see or hear and turn it into patterns and themes without even meaning or actively trying to, etc.).  Further, from my earliest days in graduate school to my present academic position, I have had mentors in my programs, in other programs, in Sociologists for Women in Society, and in Society for the Study of Symbolic Interaction who were and still are kind enough to accept and help me in countless ways as I try to survive the necessity of being social in the construction of an academic career.

It is also with these resources in mind that I remain well aware that many people managing chronic conditions everyday cannot safely speak out about their experiences, marginalization, and /or aspects of ablest bodily and mental assumptions and norms that impact their academic careers. I also know all too well that in many cases chronic conditions do limit productivity in terms of normative metrics like publishing in much the same way they limit me socially, and the only way to shift these burdens is for those of us who can to start speaking out and advocating for a more realistic understanding of the multiple aspects of scholarly experiences and lives and the natural variation in the ways human bodies and minds operate.

I thus share my experiences in hopes of facilitating dialogue concerning the management of chronic conditions in the academy (and elsewhere), steps we could take to provide resources for such management within academic settings and programs, and concrete ways we could begin to shatter the stigma and silence surrounding this prominent and widespread experience. For many people, mental and physical conditions will not go away, but if we work together, we could get rid of the ways current academic norms, simplistic and conformist assumptions about bodies and minds, and silence surrounding mental and physical health within and beyond the academy punish people for their pain. In so doing, we might instead create a culture where people experiencing the wide variety of empirically common bodily and mental types and forms are celebrated, affirmed, and accepted as full beings capable of providing diverse perspectives on a complex bio-social world.

Writing about Bisexuality

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This week, Conditionally Accepted will post my two-part essay on bisexual marginalization in the academy. In this post, I reflect on the experience composing these essays to offer some other things for people to consider when engaging with sexual fluidity in our world.

When a colleague I admire (Dr. Eric Anthony Grollman) asked me to consider writing about being bisexual in the academy, I began wonder what I would say. On the one hand, talking about my sexuality and sexual experiences is something I have a lot of experience with and generally feel very comfortable doing (in large part thanks to a very supportive network of loved ones of varied sexualities I can turn to for support when I need it).  On the other hand, bisexuality is a such a wide and varied experience that I was uncertain what aspects I should focus on in the post.

As I often do when confronted by such questions, I conducted an informal poll of sorts.  I reached out to a lot of sexually fluid people I know within and beyond the academy (most identify as bisexual, but others self identity as polysexual, pansexual, trysexual, fluid, and / or Queer), and asked them “If you were granted a platform to talk about bisexual experience that might be read by many binary sexual folk (i.e., heterosexual and lesbian/gay people), what would you want to discuss most.”  I was lucky enough to get a lot of responses, and I began to synthesize them along the lines of how we are typically defined by others in the academy and then symbolically assaulted by the same others using the definitions they came up with in the first place.  I then turned my attention to binary allies (i.e., lesbian/gay and heterosexual folk who are supportive of fluid people, communities, and issues), and asked them roughly the same question.  Again, I got many useful responses, and they ultimately spoke to the definitional question and attempts to “make y’all fit into our binaries” as one said.  As a result, I focused the Conditionally Accepted essay on definitions of bisexuality (part one) and strategies for combatting biphobia based on such definitions (part two – coming soon) and I encourage everyone to check out these posts (as well as this one by Dr. Julia Serano) and hope they may be helpful to people regardless of their sexual identities and preferences.

By the end of the experience, however, I realized there were at least two more important components that I should at least raise for further commentary. First, I would like to share some other common issues raised in my informal poll that we might want to consider in relation to sexual fluidity within and beyond the academy. Then, I would like to share some definitional issues I accidentally ran into in relation to talking about binary sexual people in hopes of helping other fluid folks avoid the same pitfalls with binary sexual colleagues and audiences.

In the first case, alongside concerns about how fluid people are defined in the academy, the three most common questions raised in my informal poll included (in no particular order) the following:

  1. Why doesn’t there ever seem to be much conversation about monosexism (i.e., the elevation of beliefs that one is naturally only attracted to one sex) in the academy despite rising recognition of systems (like heterosexism, homonormativity, and cisnormativity) that are often built upon this ideology?
  2. How do binary sexual people (generally lesbian and gay people and seemingly more and more popular recently) reconcile calling themselves Queer (i.e., a label initial conceptualized via the rejection and opposition to binary categories) and also mobilizing “born this way” or “binary lesbian and gay” claims? How do they make sense of this contradiction?
  3. Since studies show bisexuals are viewed less favorably and sometimes experience even more marginalization than binary sexual minorities (i.e., lesbian and gay people), where are the massive calls for action on behalf of bisexual communities that we see so often from and for gay and lesbian communities?

I can’t pretend I have answers to these questions, but I do wonder what binary sexual people would say in response.

In the second case, one thing this experience taught me is that some of the terms I use for binary sexual people (and hear used regularly by other fluid sexual folk) may be problematic when seeking to develop fluid-binary conversations. As a result, I thought I would mention this aspect in hopes of helping such conversational efforts since (best I can tell) we all have more in common (especially binary and fluid sexual minorities) than we are often taught. To this end, I want to share a handful of terms I use to refer to gay/lesbian and heterosexual people regularly in practice that do not seem to raise any issue for fluid sexual folk, but might for binary sexual folk.

I have used these terms (and was taught them – sometimes by gay/lesbian and heterosexual people) interchangeably because from a fluid perspective they all basically mean the same thing (i.e., the same way that in practice bisexual, pansexual, polysexual, trysexual, and fluid tend to all mean the same thing in practice among the vast majority of people I’ve met). While these are all the same from my perspective, I regularly learn that they can mean different things to binary sexual people, and I think it is important to be aware of such variation in order to avoid (likely unintentionally) hurting people who see certain terms in certain ways.

When talking about sexual binary folk, I tend to use the following terms as similes that all convey “this person identifies within homo/hetero sexual binary categories,” but here I’ve noted observations about how binary sexual folks respond in varied ways to these terms and / or how I’ve seen them used:

  1. Binary Sexual – I have only heard bisexual / fluid people, bisexual / fluid allies, gay/lesbian/straight folk who don’t agree with the “born this way” rhetoric, and / or gay/lesbian/straight people who identify as politically Queer and /or somewhat fluid or fluid capable use this terminology to date.  I admit, this is my preference simply because it focuses attention on monosexism and the sexual binary.
  2. Gay / Lesbian / Straight – I have yet to find any negative reactions to these terms in the academy, but some homosexual people without access to college education do not like the terms gay and lesbian and prefer homosexual or same-gender-loving.
  3. Homosexual / Heterosexual – Some gay/lesbian people in the academy don’t like homosexual and some straight people don’t like heterosexual – they offer too many different reasons in my experience for me to effectively summarize them here.
  4. Homophile / Heterophile – I’ve only heard this used by gay/lesbian elders and by elder straight allies to gay/lesbian communities. I don’t actually know what younger gay/lesbian/straight folks think of these terms, but I would like to learn.
  5. Same / Separate Genital Loving – I’ve only heard this term used politically by bisexual, intersex, asexual and transgender people seeking to (a) decouple sex and gender, (b) Queer assumptions of romance tied to genital appearance and use, (c) not erase same-gender (i.e., same gender identity and / or presentation) heterosexual, asexual, bisexual, and other relationships, and / or (d) oppose “born this way” or “genitals determine selfhood” rhetorics.

Once again, I have only learned what some sexual binary people think of these terms by engaging them in conversation. In much the same way I suggest in this weeks essays at Conditionally Accepted, I think the way forward is to have such conversations no matter how difficult in hopes of embracing the possibility of full sexual equality for all.

Finally, I should note that for many wonderful sexual binary people and sexually fluid people I have met, none of what I’ve written here will be new or original, and I appreciate such people everyday since they ease the experience of living in a primarily-binary-defined world. To those who this may be new information, however, I hope it is helpful to you in engaging with sexual fluidity or binaries in your own world, and building healthy and mutually respectful connections between sexually binary and fluid people.

I have been lucky enough to meet people who cannot imagine sexual or romantic attraction and activity with anyone that doesn’t have the same or different genitals.  I have also been lucky enough to meet people (like me) who cannot imagine genitals having anything at all to do with sexual or romantic attraction and activity.  I have also been lucky enough to meet people who exist in a wide variety of areas between these parameters and / or bounce around between these parameters in daily life and / or in relation to certain potential lovers.  In all such cases, I long for the day when members of each of these behavior and desire groups stand together equally recognized, celebrated and affirmed in their consensual sexual and romantic endeavors.

J. Sumerau

What is Me-Search?

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When we first started hosting panels at conferences discussing Writing Where It Hurts, more than one person asked me why I thought this was important. While there are many reasons I think exploring the personal elements of teaching, research, and service is important educationally, scientifically, politically, and professionally, in this post I would like to focus on one specific aspect that (from my experience talking with people in varied fields) seems far too common. I’m speaking of the term “me-search.”

In my experience, many scholars refer to work that engages some aspect of personhood as me-search. While this is a cute phrase, it is generally used to bolster claims to objectivity and / or to marginalize scholars who work in areas that have personal significance for them. While others have pointed out problems with believing in “objectivity” and reasons people may engage in personally meaningful scholarship and advocacy, I would like to take a different path here, and ask what exactly is meant by the term me-search. On the surface, the best answers I have been able to find for this question at conferences, online, in departments, and in informal conversations suggests the term refers to any case where someone conducts research in an area or with a population that is personally relevant to them.

Based on this suggestion, me-search could actually just be considered a synonym for science. When, for example, an American demographer studies American population trends, ze is conducting me-search because ze is studying zir own population. In a similar fashion, when a religious person analyzes surveys to see how religious variables correlate to other social aspects, this person would again be engaging in me-search because they are studying an area (i.e., religion) that is part of their own life. Likewise when a scholar explores brain tissue or any other element of human biology, said scholar is engaging in me-search by attempting to explain something they have within them in scientific terms. In fact, even studies of animals could be a form of me-search because every human experiences a world wherein they interact with and may seek to understand animals (as well as plants and other natural phenomena) from a rather early age. One could even go as far as to say that if science is the study of the natural world, all science is me-search because all of us are parts of the natural world, and both influence and are influenced by this phenomena. Unless someone can find some area of study that does not influence human life or somehow become non-human prior to doing any kind of research, all research is ultimately me-search because all research seeks to make sense of the world we (or me) live in to the best of our current abilities.

If, as it appears, me-search is simply a synonym for science based on its most common definition, then we must ask how this became a slur or source of marginalization. One fruitful place to start such an inquiry lies within the examples I gave above. Anyone familiar with the way the term “me-search” is tossed around likely realized early into the above paragraph that I used examples that are never (that I’ve seen) called me-search despite the fact that in each case the researcher is exploring elements of their own self and existence. Considering that these are some of the older (or traditional if you prefer) areas of science, it seems curious that no one ever seems to note them in discussions of me-search. Rather, most of the time when people use the term me-search they are referring to (and generally denigrating) scholarship done by, done about, or done in the service of minority communities or marginalized subject areas.

Examples of this contradiction wherein some personally relevant scholarship is deemed me-search while other personally relevant scholarship is not may be seen throughout current scientific structures and norms. When, for example, a racial minority scholar studies racial minority communities to illuminate systemic racism, people may accuse this scholar of me-search to create a reason to lessen the importance of their findings. However, no one ever seems to make the same claim about a white scholar studying populations (like the GSS or any other large scale data set) full of white people without mentioning race or while making claims about race. In a similar vein, I have yet to hear anyone mention that white scientists working with biological samples and claiming racial findings are doing me-search. Rather than noting that their own racial identities likely play a role in how many or what kinds of races they find in biological samples, such researchers typically offer sweeping claims about race without much critique from the rest of science until after the fact. In all such cases, researchers are studying something deeply salient in anyone’s life (especially in American society), but only when racial minorities do so is the term me-search ever called upon. Other than protecting institutional racism embedded within the history of the academy and science, what purpose does it serve to call one person’s (i.e., a white person who obviously has a socially constructed race and a stake in racial politics consciously or otherwise) racial findings “objective” while we call another person’s (i.e., a racial minority who obviously has a socially constructed race and a stake in racial politics consciously or otherwise) racial findings me-search?

We see similar situations wherein heterosexuals study sexualities or samples full of sexually identified people, men study gender dynamics or samples with multiple genders, cisgender people study gender dynamics or samples of other cisgender people, religious people study religion or samples full of religious people. In all such cases, the scientists are doing me-search (or science), but we only tend to use the term me-search to refer to sexual minorities, women, transgender people, and nonreligious people studying the exact same things. In so doing, we reproduce the subordination (both within and beyond the academy) of sexual, gender, racial, religious, and other minority communities by emphasizing personal connections in minority scholarship while downplaying or denying personal connections in scholarship by people occupying privileged groups.

This observation brings me back to why it is important to discuss and reveal the personal aspects of research, teaching and service. Since I have yet to find a scholar who does not have a personal stake (whether admitted or not, whether conscious or not) in the findings they present in physical, social, and other sciences, terms like me-search appear to be academic methods of social and knowledge control that limit our understanding of the world and marginalize people for no reason other than being honest about the influences that feed into their scholarly endeavors. I thus became involved in this project in hopes of (at the very least) beginning the process of celebrating the bravery of people who openly engage in personally-meaningful scholarship, and challenging those who hide behind academic “traditions” and “control mechanisms” to avoid admitting the personal stake contained within their own findings, arguments, and assertions. If science is to actually provide accurate knowledge of the world and potentially facilitate a better world, I think one of the first steps involves recognizing that all research is a form of me-search, and embracing the personal, subjective, and human elements of academic work emerging from a wide variety of backgrounds, perspectives, and experiences with the natural world.

J. Sumerau