Sidelined: Contraception Side Effects and Gender Inequity

In this post, Xan Nowakowski explores recent discussions arising from clinical trials for men’s contraception in relation to broader patterns of gender inequity in health and contraception and some of their own experiences navigating gender, contraception, health, and side effects.  

I’ve been seeing a lot of posts on social media lately making fun of men for dropping out of clinical trials of hormonal contraceptives due to terrible side effects. This isn’t remotely okay, and it needs to stop. Suggesting that men should martyr themselves on the same crosses other people have been involuntarily nailed to for centuries isn’t a solution, and frankly it’s terribly cruel. The issue here isn’t that men are speaking up about feeling terrible and prioritizing their health in choosing to drop out of the clinical trials for these drugs. The issue is that women reported the same exact side effects in trials of the same drugs that are currently on the market for people with ovaries and uteri. Rather than those trials being shut down as the one for contraceptive pills for people with penises and testicles was, the trials continued and the women’s concerns were dismissed as weakness or figments of imagination.

Reproductive autonomy is a fundamental human right, and people shouldn’t have to feel physically and/or mentally compromised to invoke that right in their daily lives. No one contraception option is right for every single person’s health needs, even within a given sex or gender group. We should have hormonal contraception options for everyone that work without making us feel like epic shit. And nobody–and I mean *nobody*–should ever be discredited for saying a medication is diminishing their quality of life.

The timing of the news about the clinical trial for male contraception couldn’t be more ironic or apt. Those of you who know me well know that I’ve taken regular-dose triphasic oral contraception since I was 17 years old, even though I was ready to get sterilized in my early 20s. Although my doctors would have approved sterilization surgery given my lifelong knowledge that I was childfree, I would still have needed estrogen therapy to combat some of the health problems caused by my autoimmune disease, most notably the threat to my bones.

I took the same two or three brands of generic triphasic pills for nearly two decades. Then when I moved to Orlando, the Publix around the corner from my house didn’t carry any of those and offered me a different generic. Within a few days, things began to go downhill.

My mental health spiraled quickly. I became extremely depressed, which is so completely unusual for me that at first I didn’t realize what was happening. I blamed myself for “fooling myself” about how much progress I’d made with my PTSD or thinking that I could actually make a go of things in my new role with FSU COM. The future became a sucking black hole in my mind, full of nothing but hopelessness and the prospect of being gradually betrayed more and more by my body. I cried all the time. I experienced terrible paranoia and started hearing voices. I found it difficult to trust anyone, including my spouse and my parents. I thought about suicide constantly.

None of this is remotely usual for me. Even during my worst experiences with the PTSD, I haven’t felt like that. I’ve always had hope. You don’t survive 32 years with a disease like mine if you don’t have hope.

I also experienced bizarre changes in my physical health, like my breasts suddenly swelling an entire cup size and becoming painful to touch even while putting on clothing. I was so exhausted every morning that my whole body felt as if it were made of lead. My kidneys hurt and my intestines felt as if someone had tied them in a knot. The flora in my entire pelvic region got completely out of whack and a terrible smell seemed to follow me everywhere. And for some reason, my symptoms always seemed to be worst in the morning and get a little bit better throughout the day, then worsen again in the night.

In the back of my mind, the possibility that this might be a bad reaction to the pills I was given swam around. I wasn’t thinking straight by the time I became seriously concerned. If I had, I would have stopped the pills immediately and called Publix to switch me back onto my old medication. But my mind went instead to blaming myself, to thinking I’d done something to make my body and mind act like that, that I just wasn’t strong enough, that now I was becoming as grotesque on the outside as I felt on the inside.

I tried to communicate with my spouse about it and kept failing horribly. I worried about being a “quitter”, or worse, a bad epidemiologist–blaming medication I’d taken for half my life for my own failings. But eventually, toward the end of the pack when the swelling in my chest had gotten so bad that I was in pain all day and couldn’t wear some of my bras, I blurted this out to J between spells of inscrutable tears.

J stopped in their tracks. “You’re on the wrong pills. Xan, this isn’t you. You’re on the wrong pills. None of this is your fault.” So I stopped taking the pills, which I usually would have done before going to bed at night. When the next morning came, I felt somewhat better rather than worse. By that night, I started to feel a lot better. My chest deflated like a pricked balloon, returning to its usual size within 48 hours. All of my mental symptoms also disappeared. I felt hope and joy coming back into my consciousness. I felt alive again.

My relief was offset by my desire to blame myself. As J pointed out, I couldn’t have been expected to put the pieces together clearly when my mind was betraying me at every turn and making me doubt myself so much. I still feel some of that doubt now, just minus the crushing hopelessness that accompanied it when I was still taking those pills. After all, this wasn’t my first rodeo with medication side effects. I’ve been on dozens of medications, some that I need to survive and others that could have killed me. Shouldn’t I have been “better” at dealing with this kind of stuff by age 32? Not entirely, and certainly not in a world where pharmaceutical companies aren’t expected to be “better” at not marginalizing and ridiculing the adverse experiences of millions of women.

In my mind I don’t see myself as a woman, but this is one of those times where the reality of that being how many others see me has been driven horribly and irrevocably home. I struggle daily now with the feeling that I became every awful stereotype of a “hormonal” woman. The feelings of violation run deep, along with those of disappointment in myself. I got thrown headfirst into a mess of gendered experiences and stigmas, and although I came out alive, I did so feeling horribly dirty and despoiled. Weeks later, the dirt still won’t wash off.

I’m proud of the men who are standing up for their right not to feel like utter garbage physically and mentally in seeking reproductive autonomy and sharing that burden with other gender groups in ways that are long overdue. I just hope that in doing so, they will stand up for all the women who’ve been getting hurt since long before male contraception ever came on the scene. The fact that the FDA has only now, after 50-some years, approved an in-depth study of linkages between depression and hormonal contraceptive use in women, is both telling and damning. The recent closure of male contraceptive pill clinical trials represents an opportunity for all of us to affirm the struggles and amplify the voices of millions of women who have been harmed by paternalistic practices in the testing and prescribing of hormonal contraceptives.

Why and how I started writing social science based novels

In this post, J Sumerau reflects on the processes and experiences that led zir to begin writing sociological based novels alongside their academic research and blogging endeavors (more information about the novel will be posted as it nears release).

The other day I posted about a dream come true on my Facebook page.  As far back as I can remember, I always dreamed of writing and publishing a novel, and earlier this week I signed the contract for my first novel to be published as part of the Social Fictions Series edited by Dr. Patricia Leavy.  Built upon the combination of my own experiences as a bisexual, genderqueer person and my research into the intersection of sexualities, gender, religion, and health in the historical and interpersonal lives of sexual, gender, and religious minorities, the novel is a bisexual and transgender coming of age story set in the southeastern United States in the 1990’s.  Since my hope is that the work will aid ongoing efforts to educate people about bi and trans experiences and we often use this blog as a way to reflect on academic, teaching, and activist experiences with writing, publishing, and teaching about personal and emotional elements of scholarship, I thought I would use this post to reflect on the experiences that led to the creation of the novel from ongoing academic and creative efforts to write where it hurts.

Like much of my work, the novel began accidentally in an inductive fashion.  I was driving through Georgia on my way back home one day when I found myself playing the same song over and over again on repeat in my car.  Every time the song played, I basically screamed – rather than singing – along to the words and felt a bit overwhelmed in the process.  These actions surprised me both because I had listened to the song many times – it was already one of my favorites – and I didn’t understand why I was having such an emotional reaction to the song at the time.  Seeking to figure it out, I stopped at a truck stop in a rural area, and spent about an hour pacing the mostly empty parking lot thinking about the song, what I was feeling, and my life in general.

When I was younger, I used to write letters to my past and future selves in some of the journals I kept as an exercise in self reflection.  Something about imagining a future and comparing the current me at a given time to the past versions of me that once existed was comforting, and often helped me process emotions, challenges, and writing ideas in productive ways.  As I paced the parking lot, I realized two things.  First, I had not written one of those letters to myself in a long time.  Second, the song I kept playing on repeat and screaming along to felt like one of those letters.  Somehow, when I sung / screamed along to the song I felt like I was singing to an earlier version of myself, and in so doing, I felt very emotional and kept thinking about the things that change and the things that stay the same over time.  I got back in the car, turned the song back on again, and restarted my drive home.

As I drove that day, I kept returning to the ways things change and the ways they stay the same over time.  It seemed like a powerful theme in my own life at the time, and I had been feeling caught between these two poles all year at that point.  On the one hand, I had somehow established a life partnership, close friendships, and a professional career that all were far more positive, satisfying, and fulfilling than I’d ever allowed myself to expect to obtain.  I felt more excited about my own life than I ever had, and I actually looked forward to (still do) time with my life partner, a close network of supportive friends and colleagues, my research and other writing, and my students.  I didn’t know what to make of this because I kept waiting on something to go wrong like it always had in the past.  These aspects of my life were so different from previous experience that I was constantly trying to make sense of my newfound luck.

On the other hand, however, many other things remained the same.  I still heard at least a handful of students every semester repeat the same questions I asked about a decade ago in college (for example, “why don’t scientists seem to know about, write about, or ever mention bi and trans people” or “how can I take these surveys seriously if they only include cis and mono people”).  I still got randomly accosted in bathrooms – the latest time being earlier in the drive through Georgia – because my embodiment in a given moment terrified some cis person.  I had just had my latest dust up with a colleague who was unfamiliar with bi and trans (and to an extent lesbian and gay) histories, terminology, experience, etc because cis, mono and hetero people are not required to learn about us in this world they control.  I had just met with another college student – this one from the area where I was raised who found me through my online blogging – who felt isolated and terrified living in a small southern town.  I still spent everyday in scientific and broader public settings where cis and mono normativities operate as dominant religions most Americans seek to enforce on everyone else, and met people – even many scientists and other well educated folks – who were unfamiliar with and / or actively denied the existence of bi, trans, poly, and some other types of people in our world.  These aspects of my life were so similar to decades past that I wondered if they would ever change.

With these things in mind, I finished my trip back home without ever changing the song playing from the speakers.  I’ve often come up with some of my best ideas – as a writer, a teacher, an activist, a researcher and a person – as a result of this or that song leading me to consider certain feelings, thoughts, or memories.  Aware of this pattern, I began randomly listening to the song and journaling about whatever thoughts and feelings arose over the next few weeks.  At the same time, I began digging through currently in use and old data sets I have of interviews, field notes and historical documents as well as old journal entries, memories, informal interviews I do with people for fun and to learn more about things for my own interests, and notes I kept about research and creative projects that never came to fruition.  In so doing, I found myself looking over notes I had for two novels I tried and failed to write while I was in college.  Back then, I never planned on being a college professor, a researcher, or a teacher, but rather, I had no clue what I would do for a living while dreaming of someday writing and publishing a novel (a dream I carried with me from my earliest memories).  Not for the first time, I realized that my mind was again leading me back to this original dream, and spent some time thinking about how the current version of me might tell the stories I began years ago.

I also spent some time with my life partner talking about all these issues over the next couple weeks.  My life partner pointed out that (a) I’d already accomplished the writing goal I set for myself after graduate school (i.e., I wanted 30 academic publications by the time I retired and I was past that arbitrary number now) in my four years post PhD, and (b) the security I managed to acquire with them and other aspects of my life gave me more flexibility about what I did with my time.  With these things in mind, they suggested maybe it was time to chase the original dream, and that even if I – as I hypothesized I would – failed it wouldn’t matter because I already had a career I loved and did well at so this could just be a hobby on the side.  Finally, my life partner asked me what novels about bi, trans, and poly experience might have meant to me as a kid, and what it might be like to have that resource for kids now, for colleagues still trying to make sense of these aspects of society, and for use in classrooms.  We kept talking about these things for a few weeks, and I kept going over all my notes, data sources, collections of published research, and story ideas.  In the end, I decided to give it a try almost entirely because they believed I could do it, and they convinced me that such stories might be at least half as useful to others now as they would have been for younger versions of me.

Fairly certain it would become yet another unfinished attempt (sometimes its nice to be wrong I guess), I began digging through all the research, narratives, interviews, and other materials I had as well as many of my own experiences over the years the same way I do with my non-fiction, research and advocacy writing projects.  As if I was outlining another analysis for a journal article, I looked for common experiences, feelings, and events throughout the sources to develop a cohesive plot for the novel.  Once I had this outline in hand, I began writing a bisexual and transgender coming of age story that – to my surprise – will be published as my first sociological novel as part of the Social Fictions Series in the near future.  I will post more in the coming times as the release nears, and in the end, my hope is that the novel may be useful both for bi and trans people looking for examples of the complexity and multiple forms of our lives in the world today, and for educators seeking to make sense of and teach about the rest of the world that exists beyond mono and cis normative assumptions.  While I’m still surprised I actually finished (much less found a way to publish) a novel after all the years of thinking “someday I’ll do that,” I look forward to what may come from incorporating my artistic interests into my existing scientific writing endeavors, and hope the work will be useful in a world where constantly explaining bi and trans existence (much less experience) remains a daily requirement for so many people who don’t fit the binary expectations of the broader society.

When the Personal Meets the Professional Meets the Personal: One Queer Trans Guy’s First Week of the Semester Processing Session

Jay Irwin, PhD, is an Associate Professor of Sociology at the University of Nebraska at Omaha. He received his PhD in Medical Sociology from the University of Alabama at Birmingham in 2009. He is heavily involved in activism and advocacy both on campus and in the larger community. His research and teaching involve LGBT health, trans identities, and sexualities.

I have just completed what has to be the most bizarre and emotionally draining first week of a semester – potentially in my entire academic career, both past and future. I had a rough summer to start. I had an invasive back surgery in July and was recuperating while teaching an online class from a rented hospital bed in my living room. I had a lot of time to think this summer and was excited for the Fall term to begin. I had modified my courses and was ready to engage students in new and exciting ways. My body wasn’t fully ready to go to work, but regardless, I had to go back to work and was intellectually charged to go engage with students. And then I had one of the most exhausting, bizarre, and hurtful first weeks ever.

THE PERSONAL MEETS THE PROFESSIONAL

Actually, this all started the Saturday before classes began. I teach an Intro to LGBTQ Studies course. To be more specific, I created the course, and I am the ONLY faculty member teaching this course. In this class we are conducting oral histories of LGBTQ people in the local community, part of a larger archive project my University just began this summer (http://queeromahaarchives.omeka.net/). I was contacting people all summer to gather a list of people whose history NEEDS to be recorded, and in my class, I am specifically prioritizing people over 50 years old, QTPOC, and trans folx, as their histories get lost the quickest. One person in particular was very excited to participate, but was currently in hospice care. They[1] were an influential and important member of my University community as well, so the archivist and I conducted the interview ourselves, on a Saturday, in their home, while their daughter and granddaughter sat by their side, holding their hand and giving them emotional strength. It was both beautiful and heartbreaking at the same time. They spoke about things – aloud – to people they’d not met before, about topics they’d spoken to very few people about. I felt honored that they let me into their life. I met their generous and amazing children and partner, who fought back tears as we said our goodbyes after the interview. Two days later they passed away. I learned about their passing in an email 15 minutes before I was to go teach my Intro to LGBTQ Studies class, where I would detail the oral history project to the students. And their history was the first life story contributed to this project.

I completely broke down. Thankfully my partner was able to talk with me and get me ready to go to class. When going over the syllabus and the project, I was honest with my students about how important this project is both personally and to the community. Our history in the local community is LITERALLY disappearing and will be forgotten if it’s not captured soon, and my community is not unique in this respect. I managed to not cry in front of the students, but I did see a few students wipe away a tear for a person they had never met. In fact, I knew this person formally for all of an hour and a half, but I can’t begin to explain the impact they have had on my life. I have never been so committed to a project like I am now with this oral history project. I refuse to let my local LGBTQ history, and more specifically the people attached to that history, go unrecognized and unremembered. I have a small suspicion that the person we interviewed held on a bit longer to life to be able to tell their story. To tell us their life. To gift us with their experiences. And I am forever changed as both a person and an academic because of it.

THE PROFESSIONAL MEETS THE PERSONAL

In this same week, I’ve helped students navigate the typical starting back to school stresses – where are my classes, what classes are still open as I haven’t enrolled yet, where do I find parking? But, as the only out trans faculty member on my campus, and someone that our students know from the larger community, many LGBTQ students come to me for support and affirmation of their identities. For example, I had a student show up outside my classroom door as I came in to teach my Intro to LGBTQ Studies class that first day. This student, who uses they/them pronouns, said to me “I need to get into your class.” No problem I said, I can get you a permit code, come on in. They said, “No, I NEED your class. I just got out of a class that was terrible and I NEED your class to feel safe.” I again assured them, no problem, and let’s talk about that other class after our class. I met with them, and they told me their concerns, largely that they felt invisible as a queer non-binary trans person in a white, cis, heteronormative space, and that they felt they had to educate their classmates on their own identities in a class dedicated to gender studies. Later in the day, I met with the professor who had unintentionally excluded this student by not being purposeful in including non-binary or LGBT students. I had to be careful in this conversation as to not make the faculty member feel shamed, but also to advocate for my student and to educate the faculty member on topics I assumed they already knew based on their own disciplinary background. It was an incredibly draining conversation, navigating multiple political levels, on my first day back at work after months off due to surgery, and on a day that I would work 11 hours due to my teaching schedule.

Next, at the end of the first week of classes, I got a call from the director of our LGBTQ center on campus, telling me she may need my help. She had just received an email that a student was in a course where the professor used the word “fag” in reference to gay people. Just in passing. Not as in the historical context of the word or referring to cigarettes in the British usage of the term. Just calling gay people “fags.” I was livid, as was the student and the director. Thankfully, my institution has mechanisms in place to address these situations, and those wheels are turning. But I couldn’t fathom, in 2016, how anyone involved in teaching would think that was acceptable.

To top it all off, a social media flare-up happened during the weekend after my first week of classes, all having to do with they/them singular pronouns. Yes, we’ve come full circle. I had posted, on behalf of my research collaborative’s official Facebook page, a video about how they/them pronouns are not new, are appropriate, and should be used. A debate ensued in which I felt personally insulted and attacked as a trans person. But, being the perpetual educator, I tried to rationally and reasonably respond to rather childish behaviors on the part of other professors at other institutions. As Facebook threads go, the conversation was on-going for about 3 days before it all settled down, but I refuse to be silenced and marginalized by other academics, whose expertise does not fall in LGBTQ or trans studies. I refuse to allow them to tell me and others within my community that they are not valid. That their pronouns are not valid. This is not how academia should work, and I’m consistently saddened to see that this is still sometimes how academia works.

OUR BLURRY AREAS NEED SUPPORT STRUCTURES

Thankfully, I have a healthy community of queer and trans spectrum friends and chosen family, both locally and from all over the world. They have reached out to me when I, the eternal external processor on social media, have posted vulnerable and raw posts discussing each of these issues. With every post, I’ve received love, encouragement, and affirmation. On Sunday, the day when all of the events of the week were being personally processed, I posted regarding my absolute exhaustion, but also my refusal to give up. My continued commitment to fight for those who are invisible in our society – the queer man who “looks straight”, the non-binary student who uses they/them pronouns but “looks like a girl”. And because my LGBTQ friends and family are amazing, I got lots of love. And then, something amazing happened. An academic inspiration to my own career – Jennifer Finney Boylan, the first trans academic that I ever saw, who helped me know that I could be an out trans academic – commented on my post and gave me support and love. It was the first time I had cried happy tears all week, a week of lots of unhappy, sad, frustrated tears.

I’m also incredibly thankful to work at an institution that, while not perfect (nor ever claiming to be), is making real systemic steps to address issues of racism, sexism, homophobia, transphobia, ableism, and all forms of bias campus wide. I have received so much support from administrators regarding the work that I do, which is not always the norm in academia. Support from my colleagues, department chair, dean, and upper administration has allowed me to continue to do the work that I do both inside the academy and outside in the advocacy world. I am grateful and lucky to work at such a university, a privilege I do not take lightly.

SUGGESTIONS FOR NAVIGATING THESE MURKY WATERS

I want to end my own, selfish processing session with some suggestions.

1.) We talk about self-care so much in academia and advocacy circles, but from my own experience, we are terrible about putting self-care into action for ourselves. Do not neglect self-care. Yes, advocate when and where you can, but know when you have to take a step back when your body, brain, and heart can’t go any farther without burning out. There’s a saying in activism circles about self-care: it’s like the safety instructions you get on an airplane – put on your own oxygen mask before you put on anyone else’s. You can’t be an effective advocate for others if you have suffocated yourself by working yourself to exhaustion.

2.) Surround yourself, as much as possible, with those that lift you up. You need those friends and family to keep going. Allow yourself to open up to them and be honest in those conversations. Tell them what you need. Ask for them to support you if they aren’t. And allow them to hug you (if you are one who’s into hugging, as I’m trying to become more comfortable with myself). Human contact can be so healing for us. If you are partnered, allow your partner(s) to comfort you. I can’t even begin to thank my partner for helping me so much this week, by holding me while I cried, by listening to me again complain and rage against injustice, and by just being an amazing human and loving me constantly. Find that one person you can tell anything to, who can be there to support you when you need it the most, whether it be a romantic partner or just a really close colleague.

3.) Find the balance that works for you. Not every academic who works with marginalized groups operates the same in terms of activism and rabble-rousing. I’m comfortable in that world (after slowly ramping up my work in advocacy over the last 10 years), but that’s not everyone’s sweet spot. Find how you are your best in regard to being a professionally engaged academic who is also fighting for social justice. There is no mold, and one size certainly does not fit all.

4.) To academics, just because we have a PhD does not make us experts in all of the human condition. Be open to learning more, and be willing to be challenged by your students. It is the height of academic elitism to assume we are the holders of all knowledge and that it is our job to impart it all to our students. My students teach me new things each and every day, and for that I am grateful. It does not make me less of an expert, but it does make me a better teacher.

In loving affirmation and solidarity, always.

Jay A. Irwin, PhD

Associate Professor of Sociology

University of Nebraska at Omaha

 

[1] I am using they/them pronouns to protect the anonymity of this person. These pronouns are not necessarily a direct reflection of their personal gender pronouns.

“You Poor Thing”: New Article Out in The Qualitative Report!

In this post, Xan Nowakowski reflects on and shares a recent publication in Qualitative Report (available at the link at the end of the post free of charge as an open access document) concerning the embodiment and management of visible chronic illness in daily life.  

Hello again readers! It’s a new season and a new academic year, and I’m happy to report that I also have a new autoethnographic publication coming out this week. If you’ve been following WWIH for a while, you may remember that earlier this year Sociology of Health and Illness published a piece called “Hope Is a Four-Letter Word: Riding the Emotional Rollercoaster of Illness Management”. This article, which focuses on the day-to-day processes and experiences of living with chronic disease, is still available online along with a video abstract introducing the piece.

In the process of writing “Hope Is a Four-Letter Word” I realized there was another rich topic nested within that study, and wound up breaking this theme out into its own critical autoethnography. Specifically, I focused on the nuances of visibility and representation for people whose chronic conditions produce readily apparent changes in physical appearance. The title comes from a comment made to me many years ago as the symptoms of my autoimmune disease became more visible to outside observers.

In this new autoethnography, I compare and contrast my own experiences of living inside a visibly ill body with others’ stated and implicit perceptions of what my life must be like. In doing so, I explore and refine theories of illness as deviance to accommodate multiple intersecting levels of divergence from normative expectations. I use interactionist sociological theories as well as a variety of other scholarly literature to analyze and contextualize my own lived experiences of embodying chronic illness.

As with most of my work, this piece strongly emphasizes the complex and dynamic interplay of multiple domains of life. These include personality traits, social structure, cultural context, political climate, and many more. Likewise, I focus on concepts of health equity and use my own experiences to amplify attention to persistent systems of marginalization and the voices of those affected. Above all else, I encourage other scholars with chronic conditions to share their own experiences of negotiating visible disease, and to advocate for active incorporation of these narratives in both formal systems of health care and informal systems of social support.

Please feel free to download and read the article at no cost here.

Have you seen me lately? A reflection on Queer Kinship

In this week’s post, the first in our Queer Kinship series, J reflects on the meaning of Queer Kinship in their life.

Earlier this year, a student of mine interested in content analysis and the structure of science sought to do an independent research study. I had recently been asked an interesting question at a conference, and so I selected twenty-five years of publications by five prominent sociology journals and had my student use these journals to try to answer the question. The question was simple – how often does sociology include the study of Bi and Trans people? While there are more details in the work in progress stemming from the analysis, the simple answer to the question was that between the late 1980’s and 2013 sociology, rather than the study of society as a whole, was almost entirely monosexual and cisgender based in these five prominent publication outlets. Even counting articles that only mentioned BT existence, there was only about 1 piece per year on average throughout the time period and within the vast majority of pieces published focused on mostly heterosexual and cisgender populations.

As I’ve written elsewhere, the aforementioned project fits in well with my experiences as a bisexual (on the pansexual end of the spectrum) and transgender (formerly transsexual, currently genderqueer/non-binary/crossdresser identified as I continue considering transition) person in sociology as well as academia more broadly. Even though I have been lucky enough to land a stable position in a department full of (often impressively) supportive, accepting, and accountable colleagues, and to develop a network of fellow BTLG scholars at other places over the years, I generally experience an occupational world wherein people like me don’t exist in the assumptions of the monosexual (mostly on the heterosexual side of this binary) and cisgender people who dominate the field or in their published works. Most surveys, as colleagues and I have noted elsewhere, provide the bulk of generalized information from the field, and yet they rarely have any way to admit the existence – much less capture the experiences – of people like me. As noted by other BT writers, this is part of long term patterns of BT erasure within and beyond academic settings.

At the same time my student was analyzing sociological literature, I was analyzing daily life – my own especially but other BT peoples as well – as part of another project. In so doing, I was cataloguing the multitude of times and ways people like me – wholly or in part – are cisgendered or monosexualized by others in their everyday lives (i.e., assumed to fit binary notions of gender and sexuality predicated upon binary notions of biological sex as a determining force in the composition of human desire and self identification). I catalogued disparities in public when I did or did not wear skirts with a visible beard, the vastly different ways people acted in monosexual minority (i.e., lesbian and gay) spaces when I said ‘I like men’ versus when I said ‘I’m bi’ and when I said ‘I’m into drag’ versus when I said ‘I’m trans,” and the countless ways monosexual and cisgender people misgender and missexualize myself and others based on their own assumptions and stereotypes both when they expressed support for BT others and when they did not. Similar to the analysis of sociological literature and previous observations about academic life, the message was the same – the existence of people like me was at best problematic or confusing for most monosexual and cisgender people I encountered regardless of their personal positions within these binaries.

I could give many more examples like the ones above from my own life, from interviews – formal and personal – with other BT people, and from our-storical records related to BT existence and experience. Instead of seeking to catalogue such a list, I use the aforementioned examples to explain what Queer Kinship means to me.

In its simplest formulation, I see Queer Kinship as the relationships wherein I am allowed and even encouraged to exist and be seen by others. For me, Queer Kinship means places and groups and relationships where people like me are not unexpected or problematic. Queer Kinship, for me, refers to the very few spaces, relationships, and situations wherein people move past monosexist and cissexist assumptions and norms to not only accept or tolerate BT people of varied types, forms and experiences, but actively embrace, expect, and look for us in their daily engagement with the world. Queer Kinship, again for me, refers to the efforts some people make to learn about and support BT people of varied types and experiences before they are forced to by activism, tragedies that actually get some news coverage, or an awkward encounter demonstrating our existence in their world. Queer Kinship refers to the interactions with others where I don’t have to wonder if they see me or if they will cause me harm because they actually see me. In my own experience, and that of many other BT people (as well as many of our lesbian, gay, asexual, and otherwise Queer cousins), such spaces and audiences are incredibly rare, precious, and necessary for well being in a monosexist (as well as heterosexist), cissexist (as well as patriarchal) society.

For me, Queer Kinship and the visibility and break from the rest of society it gives me shows itself in differential reactions to the same stimuli. I think about the store clerk who spots me in the makeup aisle and proceeds to stare at me, follow me, and even ask if I’m in the right place as a result versus my life partner seeing me in the same place on another night and offering to get me some new eyeliner. I think about people looking at the fact that I’m in a committed relationship and asking if I’m heterosexual, monogamous or done with the “gender stuff” now versus my life partner and I talking about men we both find cute over drinks; about the ways we decide as a unit how monogamous, polyamorous or anywhere in between we decide to be at a given time; and about plans and details we would need to work out together if I do transition later in life. I think about people awkwardly shifting between cisgender pronouns and terms depending on how I appear in a given moment versus my best friends and life partner treating me equally well no matter how I’m dressed or appearing in a given moment. Because I’m lucky enough to have a kinship group that I can rely on and be there for every day, I can actually come up with far more examples of such discrepancies than I have room for here. In fact, I was actually saddened when I was working on this piece by how easy it was to make a list of such examples that was far too long for comfort.

In the end, for me, Queer Kinship matters because the people closest to me provide me with most of (and some weeks the only) times when I know I’m seen without it hurting in some way. In my profession, the literature my profession creates, and my daily life, I get by like so many others worried about any time my differences are noticed while also wishing I could be seen in a safe manner by the rest of the world. But in the eyes, arms, and moments spent with my own little Queer family and network, I get to be seen and I get to experience this without the fear of danger that accompanies such visibility in other spaces. That, for me, is the importance of Queer Kinship in the forms that show up in my own life, and the forms that show up in other ways for many other people I have come across over the years.

Happy Birthday Write Where It Hurts

This week the Write Where It Hurts blog is one year old. With this in mind, we thought it might be useful to look back over the past year, express our appreciation to the many people who have contributed to the growth and development of the blog and its associated social media sites, and glance toward the coming year.

On June 6, 2015, we launched Write Where It Hurts online and on social media sites with the hope of providing resources for and generating conversation about the personal and emotional aspects of teaching, research, service, activism, and other elements of scholarly and creative life and experience. With this goal in mind, we spent the year utilizing our social media presence to disseminate information and resources, and posting 42 blogs covering a wide variety of topics from a wide variety of backgrounds, perspectives, and traditions. Our hope was and remains to, as one regular reader noted at a recent conference, create a space for open dialogue as well as resources for people managing the personal and emotional aspects of academic and activist life.

Whether looking at numbers or conversations, the past year exceeded any expectations we had at the onset of this project. We have received word of cases where posts from the blog have been useful resources for teaching in classrooms, educating potential allies in activist groups, and sharing experiences in interpersonal settings. At the same time, the blog has garnered much more traffic and attention than we expected it to (especially in the first year), and we have had far more people seek us out at conferences and online for further discussion than we thought would happen. At the same, response to our social media sites has been far more active than we initially expected, and has led to interesting and useful collaborations. All of these and other observations throughout the year suggest this type of space is useful for many people, and encourage us to continue developing it for broader use.

We have also benefitted tremendously in the past year from the talent and bravery of our guest authors. We have truly been privileged to work with incredibly talented and insightful guest writers, and in each case, we – as well as the blog – have benefitted immensely from their perspectives, experiences, and analyses. It is with this in mind that we reiterate our ongoing calls for guest contributors, and encourage anyone looking for a space to Write Where It Hurts to reach out to us with your ideas, compositions, and other thoughts as there may well be space for you on the blog and there may well be others who would benefit from your offerings.

As we move forward, we simply wish to thank you all for an incredible first year in the academic blogging world. Thank you to all the readers, sharers, tweeters, guest writers, and others who made this year possible. Thank you as well to all the people in person and / or online who shared with us the ways the blog posts and / or social media sites were useful to you personally and / or professionally. Thank you all for making Write Where It Hurts first birthday feel like a celebration. We will continue to work on the blog and on social media, and we look forward to all the conversations to come.

Xan, J, & Lain

Of Children Born: The Journey of an Agender Lesbian Mother

Simone Kolysh is a PhD Candidate in Sociology at the CUNY Graduate Center. They are also an adjunct professor at Brooklyn College and Lehman College, teaching in Women’s Studies and Sociology. Their work addresses intersections of gender, sexuality and race.  In this post, Simone reflects on being an agender, lesbian mother of three children that parents against dominant narratives of gender and sexuality in their queer household. 

My body is a mother’s body. It is not a young body with smooth lines from the thighs to the small of the back. Mine is a body of valleys, soft and reminiscent of uterine battles and pain. It is a jagged, unshaven landscape full of stretch marks and cowardly veins that collapsed under pregnancy weight. Mine is a body that managed a labor without contractions and the darkness of postpartum depression, as the light of my first child was brought into the world on a hot July day. I rocked this body around the bed unable to loosen it free of panic but kept it close to my child so that no matter what was breaking inside me, I’d keep him whole.

My body is a mother’s body. It is not a dancer’s body with perfect posture and well-shaped legs. Mine is a body that knows what an obsession dance can be but that movement no longer comes first. Though it responds to an inviting embrace of the Argentine Tango, it does so with a reluctant and bothered ankle, broken weeks before the light of my second child was brought into the world on the day I, too, was born just twenty-five years prior. I crumbled under my own pressure, onto a mailbox at the corner of Kings Highway and West 8th street. Cursing, I hopped home thinking that to labor with a broken limb is just what I needed.

My body is a mother’s body. It is not my mother’s body with frail shoulders and cheeks full of Botox. Mine is a body of risks, piercings and tattoo ink. When the light is right and the mirror is bribed, I can see what my lover finds gorgeous. And though I claw at my body because it does not always make sense to me, I remember how bravely it got me through my only labor without pain meds, as the light of my third child was rushed into the world at the Brooklyn Birthing Center. When I now feel my three children collapse onto my breasts that have struggled to breastfeed, I know that my body is a mother’s body and it is well worth the worship.

______ ~ ______

There is nothing like a slurred ‘You’re so sexy, baby’ from some guy on the street to remind me that I am seen as a woman despite holding an agender identity. Even men that aren’t strangers have said that I am ‘so obviously a woman’ because I turn them on. Such experiences of sexism, laced with homophobia and racism when I am with my Black female partner, make it obvious that my struggle around gender takes a backseat to our collective struggle as people of marginalized gender and sexual identities, trying to navigate a world where white, cisgender, and heterosexual men hold a significant amount of power.

Yet white, cisgender and heterosexual men may be the future demographic of my three children, ages eight, six and one. Therein lies the paradox of an agender lesbian mother trying to raise feminist kids in a society that teaches boys to put down women and people that don’t conform to mainstream ideas of gender and sexuality. As a scholar of gender and sexuality, a sociologist and a Women’s Studies professor, I have given my kids a critical eye towards gender, sexual and racial hierarchies. It also happens that my middle child has taken a gender non-conforming path, linking once more our gender journey as mother and child.

Shortly before he was born, I began to struggle with the category of ‘woman’ into which I was born and raised. Once I admitted to myself that I could not finish the sentence, ‘I’m a woman because,’ and explored identities beyond the gender binary, I was able to more fiercely carve out a safe space for my children. Perhaps unsurprisingly, one of the first battles took place between me and my biological family that not only rejects and erases my gender and sexual identities but also believes I am causing my children great psychological harm. So before I can think through my gender identity and how it has evolved through my motherhood, I must face how my own mother shaped my ideas of womanhood.

My mother’s main lesson was that one’s power as a woman comes from seducing men and appealing to the heterosexual male gaze, in addition to becoming a mother and a wife. Whether it was because our family is Russian-Armenian or that the prevailing attitude across most cultures is one of patriarchy does not matter now. When I showed interest in taking charge of my pleasure or being with women, she took me to see a psychiatrist. When, at twelve, I came out as bisexual, the closest word I knew at the time to describe being attracted to more than just men, she cried. When I married at twenty, she was glad, hoping it was all a phase.

Rather immediately, I became obsessed with getting pregnant since that meant ‘having it all.’ Three years later, I was a mother of an eight-month-old child, banished from my house for breaking up with my husband. I was in love with another man, someone who was my equal. He helped me come into my motherhood by taking over my child’s care from my mother who tried her hardest to teach my son traditional gender norms. To this day, my first child is more aligned with ‘boy things’ because at the time I did not feel strong enough to stand up to my family.

My new partner supported my being queer, the label I took up during college, and my exploration of gender. When we married, I was pregnant and determined to raise this child differently. As I became more involved in LGBTQ scholarship and activism, I struggled with my gender identity and it took about three years to publicly come out as gender non-conforming, during a panel on transgender identities. It was a fleeting moment of being true to myself in a public setting since, without constant coming out, no one can ‘tell’ I am not a woman.

I have to come out again and again because it never quite sinks in and some people simply forget that I am agender or that my pronouns are ‘they/them.’ Generally, I never correct people if they use ‘she/hers’ because I am glad to align myself with women and do, to a large extent, experience the world as women do. Though I would like to not be perceived as any gender, changing my physical appearance was never essential – I do not want to change my body, just the way others link it to womanhood. Not making a physical transition makes it difficult for people to see me as agender.

Even though mothering, to me, does not mean I’m a woman, it adds to my invisibility as an agender person because of the assumption that if one has been pregnant and birthed three children, that they are even more of a woman. It certainly made my biological family like me more, because I gave them ‘three healthy boys,’ a marker of status within a sexist community. It is as if the assumed gender of my children helped solidify my womanhood. And, as a mother, I was now responsible for raising them properly, to become grown men able to provide for their families through upward mobility.

Which is why I am glad that my oldest child’s first Barbie was the Halloween Barbie, scary not only for its lack of realistic measurements. Growing up in Russia, having a Barbie meant you were better off than other families. When naked ‘pupsiki,’ which happened to be gender-neutral dolls, were all we could afford, Barbie symbolized a ‘better life,’ a life sought in the United States. Now I am raising my own children in Brooklyn, New York, but there is little place for the Russian-Armenian values of my past. After all, it was not in my parent’s dreams to have their grandsons play with dolls.

Instead of being groomed to be ‘real men,’ my kids are raised free of gender norms, which allows them to develop their identities safely as they learn more and more about the world. And, prior to learning about gender, each of them gives me a gift. As an agender person, moments when I am not gendered are essential to my wellbeing and how I see myself but they are rare. When my children are young, they are able to see me as Simone or Mommy without gendering me or seeing me as different from them. Even when they have noticed physical differences between their bodies and mine, I have explained everything from menstruation to genital shape without attaching biology to gender.

So when my kids look at me during those early years, their eyes are a place of freedom. In a way, motherhood has given me a way to find moments of validation for my agender identity, even if they are short-lived. I cannot say enough of these transformative experiences because I know what it feels like when a person with no pre-conceived notions of gender is able to see me. The intrusion that takes place when the outside world teaches them their mother is a woman is always disturbing and requires significant re-education. Long ago, I made a blog called Gender/Detki – Rearing Logical Children. In it, I had hoped to provide concrete examples of how I addressed gender and sexuality with my children.

Looking over the blog now, it is clear that my children knew little of gender until they interacted with their maternal grandparents, who live downstairs, or their Russian preschool environment. Their father and I never called them boys and they were allowed to play with any toy and wear any article of clothing, including dresses, tutus and fairy wings. Their hair was never cut and they never heard a single thing about their behavior not ‘being appropriate for boys.’ Naturally, what they learned from us, their chosen family made up of multiple parents and family friends, clashed with what they learned from others.

It was quite a surprise for my children to learn that boys and girls are often separated in preschool throughout the day, that boys and girls have to go to different bathrooms and that specific recital roles, of gnomes or princesses, are reserved by gender. The length of their hair became an issue, because other kids would say they look like girls and their ‘girly shirts’ got laughs. When I dealt with the administrators, I did not disclose my agender identity or any additional details about my family. I argued that if girls were getting their hair styled on a daily basis, the same can be done with my children’s hair and reminded them of the fact that we paid generously for tuition.

Once my kids got attached to their teachers, they wondered whether gender was good or bad. I taught them that people have different opinions and that nobody has the right to police how their gender is expressed. Sadly, because of their encounters with other adults and children, they have learned to expect harassment based on their choice of clothing, toys or behavior. Some of the time, they would give in to the pressure and, for example, ask me to cut their hair. Because it is their body and their choice, I have done so but with tears in my eyes. The pain and the anger I feel on behalf of my children exacerbates my own trauma.

Now older and in public school, my kids manage a lot more backlash, which is hard for me to watch. As an adult, I have not yet figured how to freely express my agender identity without having to constantly educate uninformed cisgender people. Why should children as young as five have to face a similar struggle? Because knowledge is power, I have taught my kids about the construction of the sex and gender binaries, the link to sexuality and how gender and sexuality are affected by one’s race, class and any number of other social factors. These topics are hard enough for my college students to grasp but the way people react to my kids’ gender ‘deviance’ makes such discussions necessary.

I am proud to say that the more I learn about gender and sexuality and about myself, the more my children are able to benefit and feel supported in their own exploration. They have shown resilience and courage by resisting harassment and trying to live truthfully. Here, I would like to return to my middle child’s gender non-conforming path. Most recently, he has become quite interested in wearing a ‘girl’s bathing suit,’ which is not going to go over well at his swim classes, summer day camp or with my biological family. Part of my motherhood journey is to be an advocate for my child and so I am gearing up to have several conversations so that he may be able to wear his turquoise bathing suit full of ruffles. When I caution him, I am sad to say that he may not be allowed to wear it and that his grandmother and others will continue to make comments. He nods and answers, ‘I will ignore them, Mama, I will just ignore them.’

When I speak to others on his behalf, part of me wants to say that I am also like him, weird and proud of my ‘deviance,’ and that I would love for my kids to be part of the LGBTQ community. But their mother’s deviance makes it hard for others to accept my children. Now that I am firmly at peace with my lesbian identity, there are new definitions to go over since their peers are throwing around casually homophobic remarks. To me it is not difficult to reconcile being agender and a lesbian but trying to explain to my kids why the label ‘lesbian’ still applies even if I am not a woman is a bit of a challenge. What I say is that others perceive me as a woman which means having to face sexism and homophobia.

If I did not have to explain to my kids why much of the world thinks our family is ‘wrong,’ they wouldn’t need an explanation because they have been raised to embrace difference. Regardless of divorce, changes in family structure, new gender and sexual identities, like their mother’s lesbianism or future children, they are surrounded by loving adults who will help them usher in a new world. Along the way, they will offer acceptance in return. Want to see an example? I recently asked my middle child about his feelings on my not wanting a gender, on being agender. Not looking up from his video game, he replied, “I feel fine because it’s your choice and gender doesn’t matter at all.”

Sacrificio

Lisette E. Torres is the Assistant Director of the Cooper Foundation Center for Academic Resources at Nebraska Wesleyan University as well as a Ph.D. candidate in the School of Education at Iowa State University.  Her scholarly interests include intersectionality, critical race theory, knowledge production, critical visual and textual discourse studies, and the sociocultural context of science and higher education.  In honor of Fibromyalgia Awareness Day (May 12th), in this post, she reflects on what she calls the “narrative of sacrificio” and how it informs her experience as a Boricua mother-scholar living with fibromyalgia.

Sacrificio. Sacrifice. To give up something for the sake of someone else. To destroy, renounce, or lose something for a belief or an end.

Growing up in a Puerto Rican household full of women, I am quite familiar with sacrifice. My two sisters and I would be reminded almost daily about the sacrifices that family members have had to make for the love of family and country – my grandmother’s humble beginnings living in poverty on a farm on the island, my father and aunt having to walk to school (sometimes with no shoes), my grandmother coming to the mainland U.S. to work in a factory, my father fighting in Vietnam, my mother managing the household, my father having to travel 2 hours to and from New York City to provide for the family . . . the list goes on. These stories of sacrifice were meant not only as a way to demonstrate how resilient our family has been but also to remind us of the responsibility that the three of us had as Puerto Rican women. We learned that it was our obligation to always try our best and to give up our own wants and needs for the family. Social scientists often refer to this socialization as instilling the values of familismo, or one’s prioritizing family over one’s own needs, and marianismo, the notion of the assumed submissive female gender role of Latinas.

However, this narrative – the narrative of sacrificio – is one that I have also experienced as an academic. The “publish or perish” mantra, working more than 40 hours per week, and the unspoken expectation that scholars (particularly women) put off having families or give up having families all together encompass some form of sacrifice, whether it be time, money, or personal fulfillment. For women of color in the academy, this sacrifice is much deeper. It is the fragmentation of the mind, body, and spirit or the creation and acceptance of multiplicity (Ong, 2005). It is forgoing speaking the language of our ancestors to converse in the elitist, colonial jargon of the ivory tower. It is physically moving away from our families and communities in pursuit of job opportunities, which causes a multitude of additional challenges that come with relocation.

From my own personal experience as a Boricua mother-scholar, there is a great tension between having the racialized gendered identity of a Latina and an academic identity. I often feel pulled in different directions. On the one hand, I want to spend as much time with my son and husband as possible. I want to keep a clean house, provide healthy meals, and be present with my child, who is growing up so very fast that I do not want to miss a thing! Guilty about putting him in daycare, I forgo working on projects in the evenings and on weekends to try to get the most of my time with my family. I also tend to put aside some of my goals and needs in order for my son and husband to be happy; for example, I often have to take the day off to take care of my son when he is sick and have never expected my husband, who is also an academic, to do the same.

On the other hand, I am well-aware of the social and structural challenges of being a woman of color in the academy (Gutiérrez y Muhs, Niemann, Gonzàlez, & Harris, 2012). We often have to work harder and longer to receive the same recognition as our White, male colleagues. The purpose and content of our scholarship as well as our inherent intelligence is questioned, and heaven’s forbid that you have a family! The baby penalty is very real; mother scholars are often viewed as being less committed to their field and to the academy as compared to their male counterparts. They are less likely to find a tenure-track job, receive little to no assistance with childbirth support or childcare services, and do not receive the proper mentoring or career advice to help them manage family and work. Add stereotypes about women of color being fertile and emotional and you can see how women of color in the academy are in a double-bind (Malcom & Malcom, 2011) that is even tighter when you incorporate motherhood and the narrative of sacrificio.

As every academic knows, there is little time and energy to devote to research, teaching, service, and one’s personal life. Every hour is precious. We talk about “work-life balance,” though we know this is a complete myth. We try to remind everyone about self-care, exercise, and finding time to recharge (which we need to do, do not get me wrong!), all the while trying to ignore the culture shift necessary to change the neoliberal influence on productivity in higher education. Yet, we still judge others based on what we assume about them and the expectations of academia. If someone leaves campus before 5 p.m., then we think they are slacking off or cutting corners. Daily conversations revolve around “how tired” we are because we “stayed up until 2 a.m. working on a grant proposal/manuscript/course.” We complain about all the varied activities that we are engaged in while simultaneously looking down on others who may not be as involved on campus. We are complicit in perpetuating the culture of busy and the narrative of sacrificio among our colleagues. And we do this without considering the impact it has on women of color or on individuals with chronic illness/pain.

Personally, the narrative of sacrificio – from my Puerto Rican upbringing and from the academy – wears on me daily, both psychologically and physically. In the spring of 2015, I was diagnosed with fibromyalgia, a chronic syndrome with no known cure that is diagnosed by exclusion. The symptoms can vary among people, but they can include the following: widespread muscle and joint pain, fatigue, chronic headaches, hypersensitivity to sensory stimuli (e.g., cold, heat, light, sound, and touch), inability to concentrate (known in the community as “fibro fog”), stiffness, restless sleep, mood swings, and depression. These symptoms have made my career in academia difficult, aside from the structural challenges I also face as a woman of color who is also a mother. However, the words used to describe my lived experience with chronic pain are extremely limiting and cannot fully illustrate how it shapes the narrative of sacrificio in my life. Despite limitations in language, I will try to explain what it is like to have fibromyalgia. Having fibromyalgia is . . .

  • Sleeping a full 8 hours but getting up and feeling as if you only had 3 hours of sleep
  • Waking up in the middle of the night with non-stop thoughts or tingling arms/legs
  • Getting up in the morning and feeling like you worked out all night because your body is so sore and stiff
  • Like walking through really thick mud or walking around with weights around your ankles all day
  • Losing what you were going to say before you can even say it; the words get stuck and you have trouble with recall
  • Losing your train of thought in mid-sentence or forgetting the names of common things (i.e., you know what it is but you cannot get the word out)
  • Revisiting files, readings, emails, notes, etc. multiple times because you cannot concentrate long enough to remember what you read/saw
  • Feeling like a rag doll on a rack, limbs being pulled out of their sockets
  • Never feeling completely comfortable in a seated or resting position
  • Being hypersensitive to temperature changes; for me, I am almost always cold and cold temperatures cause deep pain in my bones
  • Being hypersensitive to touch; there are days when I literally cannot stand wearing socks!
  • Feeling like an open nerve
  • Feeling on edge, like you are ready to fight at any time
  • Feeling incredibly disappointed in a seeming lack of progress due to energy level
  • Feeling guilty and depressed that you cannot do all the things that other parents/academics can do

When a chronic condition like fibromyalgia intersects with the narrative of sacrificio found within Puerto Rican culture and the academy, it makes an already difficult journey as an academic almost impossible. As a mother-scholar of color, I am continuously trying to avoid the cultural taxation (Padilla, 1994) placed on faculty of color, balancing being an advocate for students of color on campus while also not participating on every single institutional diversity committee. Like most scholars of color and working moms, I work twice as hard to receive half the credit. I worry that I am not a good scholar or mother, knowing that I am being judged by others on both fronts. Stereotype threat, imposter syndrome, and racial microaggressions are daily challenges for me that can wear on the mind, body, and soul. I know that I already have three strikes against me in a White patriarchal society – I am a woman, I am a person of color, and I am a mother. I am viewed as “less than” and “unworthy” of being in higher education. I am already presumed “lazy,” “inarticulate,” and “incompetent” by the mere fact that I am a woman of color, and I sometimes fear that my fibromyalgia adds to those assumptions.

In an effort to confront the narrative of sacrificio in my life, I have decided to accept that I have a finite amount of energy to give due to fibromyalgia and, since stress can exasperate my symptoms, I must embrace what Dr. Eric Anthony Grollman calls a radical reprioritizing of my life. As such, I have started practicing Taiji every week and taking time out for a massage every month, which helps with stress and pain management. I try to not to bring work home with me, accomplishing as much as I can in the office as possible and being okay with that. I also try to practice slowing down, with great reminders from my colleagues Dr. Riyad Shahjahan and Dr. Kimine Mayuzumi on their blog. While I am working on me, I want to share my lived experience with other women of color who suffer from chronic illness who may also be academics and mothers. You are not alone and the narrative of sacrificio does not define you! We do not have to sacrifice ourselves. As our sister in the struggle, Audre Lorde, wrote in a Burst of Light (1988), “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.”

Recovering from Graduate School: Rewriting the Trauma Narrative

Eric Anthony Grollman (@grollman) is a Black queer feminist sociologist and intellectual activist; they are an Assistant Professor of Sociology at the University of Richmond. They are the founder and editor of the blog, Conditionally Accepted, which recently became a regular career advice column on Inside Higher Ed.  In this post, Dr. Grollman reflects on negotiating and making sense of trauma related to graduate education. 

“What’s the deal with this PTDS book,” my parents asked when they last visited me. Common understandings of post-traumatic stress disorder (PTSD) – the mental scars that soldiers, survivors of sexual violence and childhood abuse carry – certainly don’t call to mind any aspect of my life. My parents even sat through my talk on intellectual activism at the 2015 Conference of Ford Fellows, in which I attempted to identify the structural and cultural factors of graduate school that inevitably led me to be traumatized by my graduate training. But, maybe they assumed I was using the term “trauma” to be provocative or dramatic. With some embarrassment, I had to explain that I was, indeed traumatized by grad school, experiencing the symptoms of complex trauma, which is not (yet) officially classified in the Diagnostic and Statistic Manual (the major psychiatric guide for mental disorders in the US).

When my therapist pointed out the trauma – really only repeating back to me comments I had made just moments before about being traumatized – I also resisted. Seriously, who gets traumatized by educational training? I wasn’t physically attacked, I was not raped or sexually assaulted, and I did not endure torture or extreme warfare. Coursework, a qualifying exam, a master’s thesis, a dissertation, and some teaching experience – these, on the surface, are about equipping me with the skills necessary to become an independent scholar, the skills necessary to obtain a PhD and, ideally, a tenure-track job. To help me to begin to see the trauma, my therapist encouraged me to write a trauma narrative.

So, I took some time to write down every challenging, offensive, and potentially traumatizing event or condition that I could draw from my memory. In the midst of writing about one memory, I would have to make a note to write about another that came to mind. “Oh, how could I forget about that!” I thought several times in this process. In the end, I had nearly filled a 70-page spiral notebook with such memories. When I flipped through the notebook, I asked myself, “who wouldn’t be traumatized by all of this?” Guilty of being an academic geek, I took the time to identify some common themes: 1) repeated exposure to and witnessing of microaggressions, stereotypes, and discrimination; 2) devaluing of my research interests, in particular, work on my own communities (i.e., people of color, LGBTQ people, and, especially, LGBTQ people of color); 3) the undermining of my career choices, namely eventually becoming a professor at a liberal arts college; and, 4) an explicit attempt to “beat the activist” out of me through the graduate training.

I have continued to work through my therapist to begin to recover from the trauma. The initial and, it seems, hardest step has been to name the trauma. It has taken some time to stop denying that grad school could be so bad, that I was somehow too weak to survive traumatizing circumstances, or that it is my fault for not leaving at the first sign of trauma. I, like most others, would never expect trauma to be one of the outcomes of graduate training. So, blaming myself or denying the trauma doesn’t help.

Once my therapist and I opened that door, I began to grow impatient. Now what? I wanted some sort of homework to do outside of therapy sessions, though I learned that was not my therapist’s approach. So, I looked into buying workbooks that I could do on my own. Unsurprisingly, most that are out there focus on what my therapist calls “big T Trauma”: sexual violence; war; child abuse; being robbed; having your house burn down; and, natural disasters. My own struggle with complex trauma – “little t trauma” – is the result of prolonged trauma that is interpersonal in nature, and likely occurred at a key developmental period (early adulthood, in my case). Since it is not included in the DSM, there are few workbooks that even mention it, let alone offer resources to help recover from it. But, I eventually found one that does: The PTSD Workbook (second edition), by Mary Beth Williams and Soili Poijula.

I’m not as far as I’d like to be into the workbook, but I find that digging into traumatizing experiences is not something I care to do daily. But, so far it has been helpful to address it head on. Recently, I completed one of the exercises in which they instruct readers to “[t]hink of another person who has gone through a similar event. Knowing now what most helped you survive, what would you say to that other person?” I don’t think that I followed the instructions, but I ended up reflecting on something much more powerful. I ended up rewriting my trauma narrative, albeit an abbreviated version.

Rewriting the Trauma Narrative

Let me give some context. In the process of naming the trauma, I have closed my memory around all that was taken away from me in the process of completing my PhD and obtaining my current tenure-track position. I entered my PhD program in sociology as an activist with a desire to study racism in queer communities using qualitative methods. I figured sociology would be more likely to open doors to gender studies, sexuality studies, and even student affairs than the other ways around. A desired joint PhD with gender studies was discouraged. A desired graduate minor in either sexuality research or gender studies was discouraged. An intended dissertation in trans health was discouraged. I also learned to self-police my interests; for example, I selected a qualifying exam in social psychology rather than gender, sexualities, or race/gender/class/sexualities. I left graduate school with a PhD, trauma, Generalized Anxiety Disorder, a cute boyfriend, expertise in medical sociology using quantitative methods, and an acute awareness that I must hide any activist work or community service. The 28-year-old me was hardly an older and wiser reflection of the 22-year-old me.

That is, in my efforts to identify just how traumatizing graduate school was, I have focused almost exclusively on the negatives – what I have lost, what I compromised, what dreams have been dashed for the sake of job security. This has been a necessary step for me to stop denying how bad grad school was and blaming myself for the trauma. But, the unintended consequences of this focus is that I have lost sight of the ways in which I did survive and thrive, pursued my dreams and values, among other positive highlights of those six years. A while ago, I tried to write a positive-focused complement to the trauma narrative, and only came up with missing the excellent restaurants in Bloomington, IN and the friends that I made there. I also met my now-fiancé there, who moved to Richmond, VA with me. And, my excellent training – despite the compromises I made – opened a number of doors in terms of jobs and professional networks. So, hey – at least I don’t regret my time there. But, that effort felt like settling for an otherwise traumatic experience.

So, back to the prompt from The PTSD Workbook. I began my answer to the question about what I would advise to others, presumably to prevent being traumatized, with: “In the thick of [grad school], I attempted to maintain activities, relationships, and projects that were not valued by my program, but that fed my spirit nonetheless.” From there, I listed example after example of the things in which I was involved during my time in graduate school. Contrary to the sentiment that I left graduate school anything but a sexuality scholar, I identified plenty of examples of the ways in which I clearly demonstrate active involvement in this subfield. I published two articles on sexualities that were co-authored with people outside of my university; in fact, my advisors only became aware of these papers upon noticing them on my CV. I also started one on trans health late in grad school, which was finally published in September 2015. As the founder of the short-lived Campus Coalition for Sexual Literacy – an initiative through the Center for Research and Education on Gender and Sexuality as UCSF – I organized a few events to promote sexual literacy on campus, including a conference on transdisciplinary approaches to sexuality research. I attended a few conferences and workshops in the field of sexualities. And, I also was involved in service on campus and in the community that promoted community-building for LGBTQ people, as well as healthy relationships in the queer community. I could go on…

In essence, I rewrote my trauma narrative. In this narrative, I didn’t sell out, I didn’t allow others to dictate my career, and I wasn’t powerless. Rather, this was a narrative about pushing back against mainstream expectations in sociology to build my career as a scholar-activist whose work focuses primarily on sexualities. This narrative allows me to recall ways in which I defined my career for myself, with necessary compromises along the way. Would the trauma have been worse if it weren’t for feeding my soul with sexualities work and activism? Or, was the trauma the result of defying mainstream expectations in sociology by pursuing such work? I’m not certain at this point, and cannot actually say what could have been. But, I’m in a better position to say what actually was. Yes, I was traumatized; but I was no passive victim.

I hope through speaking openly about the trauma, about the efforts to “beat the activist” out of me, and the training that attempted to steer me away from studying my own communities to make it easier for current and future marginalized grad students to weather the challenging circumstances of grad school.

 

“Hope” Springs Forth: New Article Out in Sociology of Health and Illness!

In this post, Xan Nowakowski reflects on a recent publication in Sociology of Health and Illness concerning the personal, political, and structural experience of managing chronic conditions in everyday life.

Hello readers! If you’ve been following WWIH for a while, or just know any of us editors outside of the blog, you may have heard a bit about my new article in Sociology of Health and Illness. It’s a critical analysis of my experiences with a prescription drug that has excellent benefits and a lot of potential side effects, and the many sociological lessons learned from trying to find the right balance between the two.

A lot of the illness management literature deconstructs major changes in health status, and the impacts of these events on identity formation and performance. This literature doesn’t yet contain as diverse an array of information and analysis on the day-to-day nuances of living with chronic conditions. I’m hoping to inspire other scholars to delve more into that area, and to do so with a richly intersectional perspective on relationships between health and social life.

To have this article published in Sociology of Health and Illness is a dream come true, and the product of about two years’ worth of work. So I’m thrilled to report that “Hope Is a Four-Letter Word: Riding the Emotional Rollercoaster of Illness Management” is now available online, along with an accompanying video abstract introducing the piece. The print version of the article will appear later this year. In the meantime, if you want to read the article and are having trouble getting access to the online version, just drop me an email.

I also encourage everyone to share the link to the online version with others who may be interested in this topic. I quite deliberately constructed this article as a narrative with theoretical commentary, not a research methods piece. It’s accessible for a wide variety of audiences, not just academics. I wrote the paper with patients, families, clinicians, advocates, and caregivers all well in mind. WWIH readers will recognize a lot of our key themes here: intersectionality of multiple social positions and roles, gender performances and violations of norms, racial and ethnic inequality, symbolic interactionism as a tool for understanding health experience, and of course a hefty dose of storytelling!

An essential contribution of this piece is detailed insight into the interplay between personality and social structure in the experience of chronic illness and the management thereof. By using my own voice to explore the complexities of different theories of social inequality, I hope to help build new ground for dialogue about what chronic illness feels like day-to-day that can inspire improvements in both community support and clinical care. I also hope to open doors for other scholars who occupy one or more marginalized social locations to share and critically analyze their own stories of illness management in everyday life.