The Dreaded Should

In this post, J. Sumerau reflects on interactions with other academics who experience considerable stress due to structural and interpersonal conditions encouraging them to focus on “what they should be doing” instead of what they have accomplished. 

I “should” be working on project x. I “should” be doing work-related task y. I “should” be preparing for academic meeting, gathering, conference z. I “should” be more productive in comparison to this person, that goal, or this norm. I “should” be doing more in my work about this issue or that problem or this population or that concern.

I should…

I should…

I should…

“Should” is a word I find myself hearing rather often from colleagues in my career to date, and it often carries with it an expectation that one is not doing enough in some way, shape, or form. In such cases, people I happen to know are hard working, incredibly talented, deeply committed, and quite impressive by any measure I can come up with downplay whatever they are doing, accomplishing, or achieving at a given moment based on what more they feel they “should” be doing, accomplishing, or achieving at that moment.

I should note that I am not in any way disparaging the people in question. Rather, from what I can tell, the dreaded should – as I call – is something they feel and experience deeply that causes them pain, turmoil, or other forms of anxiety and stress. I further recognize, as others have noted, that this “shoulding” is encouraged in academic contexts as well as broader capitalistic contexts. People are constantly exposed to messages suggesting they are not doing enough, requirements that are often incredibly vague and subject to interpretation, and very real fears concerning job security, opportunities, and resources in the academy. Put simply, I am not knocking the people who feel this way, but rather I find it quite impressive that they manage to do so well while feeling these things on a daily basis. For me, their management of such feelings demonstrates a special type of strength wherein one feels regularly that they are losing a game, and yet somehow manages to continue on, do solid work, and inspire and connect with others.

At the same time, as someone who – thus far it appears – is immune to “shoulding” or thoughts about what I “should” be doing, I think this is a pattern that should be noted, discussed, and recognized because the effects of such stress on people likely – and from what I’ve seen empirically do – take an incredible toll on their happiness, health, and well being. In many cases, for example, I see people who experience their lives in ways where “I should be doing x” overshadows all the things they are doing, takes them away from important self care, and / or leaves them constantly feeling like nothing will ever be good enough. This is a recipe for negative outcomes, and yet it is encouraged in academic fields in many cases.  I cannot pretend to understand what it is like to feel this way – I tend to live in the moment to the point where even when I need to plan for the future I don’t do so all that well – but I wanted to talk about how these patterns feel or appear to me as I often serve as a source of support for many people who experience such feelings.  In many cases, I am lucky enough to be helpful to them in such cases, but in so doing, I am continuously struck by how powerful and damaging “should” can be in the current academic climate.

As such, I wanted to focus here on what we may miss when we become – or are trained to become – focused on “should” instead of “did” or “done.” If you are one who often feels like you “should” be doing more, take a moment and ask yourself what have I done instead. I ask this simple question all the time when colleagues start talking about how they “should” be doing something. Universally, the answers reveal a lot of accomplishments – for example, well I did submit that paper; well I did inspire that student; well I did something special for my partner, friend, or other loved one on Tuesday; well I did rest and relax this weekend; well I did get to the gym; well I did start outlining that grant; well I did just present at a conference last week; well I did some volunteer work or charity last month; well I did get better at “insert hobby here” this week; well I did come up with that new teaching technique I wanted to try this semester; well I did get to hang out with my partner, friends, kids, etc this week; or well I did think about a paper idea that could be really cool.

I could go on, but odds are you are doing lots of things – personally and / or professionally –  that you could be giving yourself credit for, and when I have asked people these questions and they have answered they often feel better at least for a little bit. Ask yourself how your life might be different if you could learn – or be trained to – focus on what you did do instead of what you “should” be doing. I’m not saying this will work for everyone, but in many cases, I have seen people realize that they accomplish far more than they have been giving themselves credit for.

I also think we need to look at where the dreaded “should” comes from in most cases I have seen. Whether it is comparisons to other people or norms within a given department or program, the dreaded “should” tends to arise from the conditions of contemporary academic life.  People face serious concerns about, for example, job security; time for lovers, friends, family, and self care; deadlines tied to advancement or even landing one of an increasingly small pool of decent paying jobs; and a culture that is focused on “what are you doing next” rather than “what have you already done.”  These pressures are greatly exacerbated for academics from marginalized backgrounds, and scholars in search of stable employment in the present market context.  Each of these factors – and many others – feed the idea that one is never quite good enough, should be constantly working toward something new to set one’s self apart or meet some (often vague) requirement for a job, for tenure, or other potential source of stability, and should spend as much time as possible working on that next thing that will make all the difference.

We see these patterns translate into a continuous series of “shoulds” and “somedays.”  When I have the job, then I’ll focus on my self care, my personal life, that study I want to do, or other factors, but for now, I should be x, y, and z.  When I have tenure, then I can have time for a family, take that trip I’ve been planning, write about what I really want to write about, or otherwise do something else, but for now, I should be x, y, and z.  These types of feelings and statements are not only commonplace among academics from what I can tell, but also understandable when we consider the broader context of academic norms, markets, and opportunities.  In all such cases, however, we are encouraged by these structural and interpersonal patterns to downplay right now and what we have achieved or are achieving for the sake of some future possibility.

As a result, I find myself wondering how much of right now people miss due to these patterns?  What might academia be like if we were encouraged to celebrate the moment instead of wishing for the future?  What might it be like if we came together against the broader cultural patterns that create these conditions?  Until such conditions can be changed, I also wonder what little things each of us may do in our own lives to ease the dreaded should we or our colleagues face, and help lessen the negative consequences of such patterns?

I’m not saying it would be easy to change the culture of “should” or the economic and political conditions that facilitate such stress, but I think we would all benefit if we came together, and gave ourselves and one another credit for the tremendous amount we all do accomplish personally, politically, and academically.  At the very least, I think we should talk about these issues, help each other as we face and experience these shared conditions in our own ways, and look for ways to create better conditions for ourselves and our colleagues individually and on a broader structural level.


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.”

The Anxiety Inscriptions

In this post, Lain Mathers reflects on zir experiences managing anxiety and graduate study.  Lain Mathers is a doctoral student in Sociology at the University of Illinois Chicago and the Assistant Editor here at Write Where It Hurts.

It is mid-February as I begin writing this post. I am sitting in my apartment at my computer, my hands floating apprehensively above the keyboard. This is an odd sensation considering the fact that usually I type so intensely that the tiny plastic squares pop off of my laptop and onto the floor. I can feel the words I want to write just out of reach, curled up in the darker corners of my brain. I start to feel my chest tightening. “No, no not right now, please not right now,” I plead with my brain. We have a constant dialogue going, but as of late it’s taken on a significantly more dominant role in those dialogues. I’ve come to know this feeling. It’s like watching a tornado bellowing toward me while being fastened to the ground. As the tornado gets closer and closer, I eventually give in to the fact that I will be swept up in the debris of my own internal natural disaster.

At this point, generally, when I can feel a panic attack coming on, I resign to it. Over the past few months, I’ve learned just how neurological and out of my control those events are, and that trying to resist them (and largely failing to do so) leaves me feeling significantly more exhausted, disappointed, and angry than if I just allow myself to lean into them, tear apart a cardboard box or two, and then sit quietly on my couch and listen to Rilo Kiley, Neko Case, or The Yeah Yeah Yeahs in the calm after the storm.

See, I’ve known that I exhibit symptoms of Generalized Anxiety Disorder (or Generalized Anxiety Condition, as I prefer to call it, since I am working against the internalized and institutionalized stigma that the ways my brain operates means there is something inherently broken about me) for a while. I’ve had nervous ticks like compulsively picking at my skin since as early as I can remember. I can be thrown into a state of total disarray over a two-lined text message that I’m afraid someone other than the intended recipient will get a hold of. I’ve found large crowds overwhelming for a long time, and regularly get up two to three times throughout the night to make sure I’ve locked my doors (so that no one can get into my apartment) and unplugged all the kitchen appliances / blown out all the candles (so that a fire doesn’t start when I’m asleep). On my walks to school, I try to replay my morning routine to make sure I locked the doors and unplugged the appliances, and if I can’t remember I will often text message my roommate (if he is home) to make sure I did. If he is not home, it is not uncommon for me to turn around and walk back home to check (even if I am only a few blocks away from school). I have to get to the airport or train station at least three hours before my trips out of town because I am constantly terrified that some catastrophic event will happen that prevents me from getting where I’m supposed to be, and I am known to check the pockets in my jacket up to 15 times before leaving my house, sometimes one right after the other, to make sure I haven’t accidentally lost my wallet, keys, or cigarettes.

All of these are symptoms I’ve learned to manage over the years. For example, I just plan my travel accordingly; I allow an extra 30-45 minutes before I go to bed to check the locks and plugs. I say out loud to myself that I locked my door as I leave my house in the morning so when I run over my morning routine repeatedly on my way to school, my own verbal affirmation to myself will be part of that narrative. And, historically, when I would get the occasional panic attack (every couple of weeks or months), I would allow myself to just experience them and make sure to try to get as much sleep as possible and drink lots of water.

Writing has also been a huge part of my anxiety management. For the past 14 years, I have been writing regularly in a journal. Presently, I am in my 94th book, and have no plans of stopping any time soon. Since I was old enough to hold a pen writing has been the place where I can document the conversations I am constantly having with my brain about all of the things I need to be worrying about or else something terrible will happen. Putting them down on paper both makes them feel real and also like something I don’t have to carry around in my head anymore (it can get quite crowded in there). Writing is the place I go during panic attacks when nothing makes sense and I can’t even really form complete sentences, yet something about the feeling of pen on paper keeps me anchored to this world. Writing is, without a doubt, my most significant and important survival strategy when it comes to my mental health.

So what do I do when I can’t write through the anxiety? For those of us that find a deep comfort in writing, the inability to do it is incredibly destabilizing and painful. Recently, I had to confront this question in a wholly unsettling manner.

For people who live with chronic mental health conditions and/or trauma, we know that triggers can pop up and derail our routines for hours, days, weeks, even months. We also know that triggers can come in the most unexpected contexts and magnitudes. So, just because one is perhaps prepared to handle a situation that has previously triggered them doesn’t mean they’ll be able to negotiate a totally new trigger with as much familiarity.

So, when my understanding of my life was recently upset by conditions entirely outside of my control, and unlike any trigger I’ve previously experienced, I began having panic attacks on a daily basis. Not only did they start occurring more frequently, but also at unexpected times compared to when they’ve previously boiled to the surface. By this point, though, I had convinced myself that writing was all I needed to settle the rush of chemicals in my brain. “Just write it out, Lain, you’ve done this hundreds of times before.” Yet when I sat down to put the chaotic words on paper nothing flowed. I was in a state of mental and emotional quicksand, sinking faster than I could get my words to secure me to this world.

This was even more unsettling because writing is not something I just do for personal pleasure or comfort anymore, it is part of my livelihood. I began to tell myself elaborate stories about how I will never be able to write again and my career as a sociologist is doomed to failure. I walked nervously around my apartment, screamed into pillows, ripped apart cardboard boxes, and smoked countless cigarettes to try and dilute the quicksand feeling but nothing worked. It was in this moment that my brain and I began to have a serious conversation and one unlike any talk we’ve had before.

“Maybe you should talk to someone, Lain. Maybe you really need that.”

“No, brain, I can manage this. You’re just really fucking with me right now. It’ll pass.”

“Will it?”

“It has to.”

“How do you know? Maybe you’re just like this forever. Maybe I’ll never stop.”

“Maybe I should talk to someone.”

“Should you, though? How do you know it will help anything?”

“I don’t.”

Before making an appointment with a therapist, I held my journal and a pen in my hand, so desperately hopeful that I would have some kind of breakthrough by just acknowledging that my mental condition is real, that this experience is out of my control (despite how much control I like to believe I have over it). Nothing. So, I made the appointment and had a flurry of panic shortly after doing so.

Over the past few months, I’ve started more openly acknowledging that I not only live with generalized anxiety everyday, but also that it profoundly influences my life in ways I never expected it would. I am continually learning that maintaining anxiety management strategies, such as writing, is one important component in a large equation of other management mechanisms, such as (for me) therapy, medication, painting, supportive friends and loved ones, and plenty of alone time. I am still learning to overcome the stigma associated with chronic mental health conditions (especially one like anxiety, that many people don’t believe to be real), and the path to figuring all of this out certainly defies the American ideal of a linear progress narrative.

Yet, here I am, in late March, sitting at a café finishing this essay that you are presently reading to the sound of Rilo Kiley’s song, “A Better Son or Daughter” and occasionally picking up the “I” and the “O” keys off the floor. The routine of bending over every seven or so minutes to fetch the tiny, plastic, lettered squares off the ground is a welcome reminder that I am still here, anxiety and all.

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.

Radical Reprioritizing: Tenure, Self-Care, and My Future as an Intellectual Activist


 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 balancing life and the tenure track as an activist scholar.

I am currently wrapping up my third year as a tenure-track professor at the University of Richmond – an elite, small liberal arts college in Richmond, VA. This semester is the first time I am teaching courses I have taught at least once before; and I’m teaching the “two” of my 3-2 yearly course load. Finally, I have a little breathing room to really advance my research.

But, the service demands, and my own campus, community, and professional involvement have increased with each passing year. As far as I know, I am the only out Black queer faculty member on my campus – one of few LGBTQ faculty in general, and one of few faculty of color in general. My classes tend to have a heavy queer, (Black) feminist, and antiracist focus. And, I make an effort to be visible on campus, hopefully letting my fellow “unicorns” on campus know they are not alone. Students’ need for me to be a teacher, mentor, and role model seems particularly great at our small, slightly diverse university.

And, then there is my intellectual activism, especially my blog, Conditionally Accepted, which I hope will expand into a bigger initiative for change in the academy. There are the symposia, conference panels, and workshops at which I have spoken about discrimination, exclusion, and health problems in academia. Though less consistently, there is work I have done to make academic research and knowledge accessible to the community. Trying to earn tenure to stay in academia, while also working to change academia, sometimes I feel as though I have two jobs – and those two jobs are typically at odds with one another, unfortunately, to the detriment to my health.

I am undeniably spread thin. Due to fear of unclear and biased tenure expectations, I do my best to exceed what I suspect that I need on the research front. (Don’t we all aim for that “slam-dunk” tenure case? And, at what cost?). I sometimes push even harder on the research front to “compensate” for my advocacy – again, owing to fear of how others’ perceive my approach to being a scholar. Despite the fears that my blogging would cost me my job, I’ve kept at it since I started my position in August 2013; I’m now the editor of an Inside Higher Ed career advice column that is read nationwide (at least among academics). I’m frequently invited to speak on campus, attend various events, facilitate discussions, and so forth. I’m flattered. But, I’m also frustrated that the campus hasn’t employed more faculty like me to share the labor. For, that’s what all of this is – work. Work that is incredibly important, and affirming, and enjoyable. But, I’m only one person!

I’m only one person. A person who has suffered from Generalized Anxiety Disorder since 2010. An academic who was traumatized by graduate school, and is now seeing a therapist to begin the recovery process. And, now I suffer from Irritable Bowel Syndrome, probably from the anxiety and trauma. And, I finally got over myself and started taking Lexapro. Health-wise, I’m a mess, or at least a work-in-progress. Why push myself so hard at work? If these were physical health problems, I would not hesitate to rest, resist demands of work, pace myself, and seek proper treatment.

Radical Reprioritizing

Recently, my perspective has changed. I have shifted toward taking the long-view. I want to be in the academy for a loooooong, long time. I’m coming for the structures and culture that allows for the exploitation of, yet lack of support for, minority scholars. I want to educate thousands of students about the social problems of the world, and what they can do to solve them. Maybe I’ll serve as a dean or provost one day; hell, maybe I’ll defy the odds and become a university president. Or, forget thinking inside of the box; maybe I’ll start my own academic justice organization, working with multiple universities rather than within just one.

With that in mind, I have realized it is time to radically reprioritize. I have identified the two most important goals for my future as an academic and intellectual activist: 1) get healthy; and, 2) earn tenure.

Self-care is my number one goal. That means making a serious effort to do the things that will promote my mental, emotional, physical, and spiritual health. I hate exercise, but it’s good for me. I can never seem to find the time to meditate, but I have to let my brain recharge just as I let my body recharge nightly. I’ll continue to limit work to 8am-5pm on weekdays (with no work on weekends, of course), with a mandatory lunch break for leisure reading, seeing friends on campus, or walking. I will continue to see my therapist, take my anti-anxiety medication, and use workbooks and private journaling to recover from the trauma and anxiety. I realize that I will be useless to everyone if I am sick and suffering or have a limited capacity for anything other survival. And, to be grim, I can’t help anyone if I die young. I deserve to be healthy and happy!

Earning tenure means lifetime job security at my current institution – an incredible privilege these days, even in the academy. It means more freedom to take chances in the classroom, in my research, and even in my advocacy. Tenure means power and access to make meaningful change on campus, in my discipline, and in the academy in general. It will also come with the responsibility to be in service to other academics, serving on various committees, mentoring junior faculty, and becoming involved in faculty governance. I find six years on the tenure-track tends to encourage junior scholars to play it safe, prioritize their own career and status over change and service, and promotes worry and mental illness. But, it is, at worst, a necessary evil to make real change.

Together, these goals help me to determine whether I can accept or take on a new invitation, initiative, or opportunity. For example, when I received a last-minute invitation to facilitate an on-campus discussion about racism scheduled for late in the evening, I quickly declined. Staying late and providing the necessary emotional energy would not have enhanced my health, and I am well aware it would do little to strengthen my case for tenure. But, I did finally agree to attend enVision – a social justice weekend retreat hosted by my campus’s Office of Common Ground; I found it incredibly affirming to interact with students outside of the traditional classroom context on these issues. Blogging doesn’t help me for tenure, per se, but it is a necessary outlet for me to vent about injustices that I and others have experienced, to build community, and advocate for change. Unfortunately, I realize there are still some things that will help for tenure that aren’t so enjoyable or health-enhancing – like networking at conferences, occasionally publishing in high-impact journals, etc. As I said, it’s a necessary evil; I can chalk it up to job security as a matter of health and my livelihood.

But, admittedly, there is also a third focus: my post-tenure future. I have heard the horror stories of post-tenure depression. Junior scholars who keep their mouths shut and their heads down find that they are lost when they raise their heads upon receiving tenure. I am beginning to work toward the career I want for myself as an Associate (and eventual Full?) Professor. Maybe my research will catch up with my passion and advocacy; that is, I could turn blogging into actual research on injustices in academia. Or, maybe my joke that Conditionally Accepted will serve as the launching pad for my academic talk show, Academic T with Denise, will actually become a reality. (I could live with just a podcast like On Being, though.) There is life after tenure; so, I’m doing what I need to to have both of those (life and tenure), but also doing the groundwork for my goals for intellectual activism post-tenure.

I am fortunate to have friends, family, and colleagues who support me in these endeavors. I realize that this is not afforded to everyone. But, I also recognize that these concerns – job security, health, and needing to make a difference – are particularly heightened for me as a Black queer person. That is, maybe I’d be stressed, but not mentally ill and medicated, if I were a white cishet man. Maybe I’d be a touch nervous about tenure, but not concerned that my work would be trivialized as “me-search” – even if I studied the lives of other privileged people. Maybe, maybe, maybe – but that is my reality (for now). I need to stick around along enough to ensure that this is not the reality of future unicorn scholars.


On not Writing

Erika Gisela Abad has a Ph.D. in American Studies, and works at Center for Puerto Rican Studies investigating intersectionality, cultural experience, and oral history among Puerto Rican communities and families.  In this post, Erika reflects on how her research in Puerto Rican Chicago sparks tension and memory in dialogues and debates with her mother.  

I struggle with not writing. Sitting with my mom after a long day’s work watching ridiculous TV shows on streaming media. I do this in the midst of professional uncertainty when my conscious tells me it is important to, well, send out applications. A woman struggling with the invisibility of her work, of her motherhood, closing the computer allows me to make her visible in the mundanity of the everyday to which we’ve arrived.

A mixed class Latina the second to finish college, the first PhD, I got this degree because making a living as a writer a mentor once told me, was going to be difficult. In the place many predicted the MFA would land me, I sit with my mom because of the reasons I write:

To heal, to release anger, to get to truths neither speaking nor working reveal. Drafting and talking through to forgive what moments trauma doesn’t want to let go. As I once wrote a mentor, it’s about getting to the table and trying to write what the other person coming to the table could or would look like. It’s about practicing with characters and metaphors how to listen through the trauma, whether the trauma be colonial, patriarchal or material – whether the trauma be that which has been named or that which must be kept invisible. Sometimes the struggle to survive demands struggles be kept silent. Human suffering, as inevitable as it is, often gets lost in the pursuit of fantasy as well as forgetting. Coming to the table is also about assessing whether the wheel turning revolution can be rebuilt or if the pieces of memory missing – memory missing because of what can’t yet be named – requires so many of us to rebuild it.

And sitting with my mom is about waiting, waiting for memory to reappear. And her memories awaken in the memories of others I record as an oral historian. Memories of parking lots turned into playgrounds, memories of late buses to colleges she never imagined. Memories of drinking Dr. Pepper for the first time, her comfort food, the comfort of being able to know more, taste more than poverty and patriarchy permitted to a young woman growing up where Puerto Ricans were trying to make place. These memories give her life beyond the college she never finished for no other reason than being by herself. Her stories lifting up from computer screens in a voice still weary of helping and reaching, come to life beyond the place of making meaning of leaving that requires returning, overwhelmed by isolation.

And I sit with that, when our skin color differences do not write away the sameness of racism we experience. A paleness that encourages forgetting that my brownness writes on the page, for the stage in ways that have her admit—not to me—that the fight continues. Responses to racism are coded in the traumas we share. Retorts and resistance colored by the adverse childhood experiences that divide us. Sitting is all she wants at the end of the day, at the end of days running, at the end of years climbing to find stable ground in which to root, in which to lift me, among her other children higher. My hands race and wring, legs twitch because work, all the kinds, exige movement.

And I struggle to not write in those moments: moments where the cogs in my head turn too fast for her to keep up; when the questions she asks receive huffs and stomps out looking for roads bigger than the rooms we occupy. In those moments where the grumbles she makes about the car driver who works when she doesn’t, because the car that is freedom to her and is more work to me in ways that put her back on the bus, on the train to move because her fixed time challenges the time that, for me, remains in constant question. The need for work fuels us in speeds and codes the other doesn’t understand.

It takes seconds to remember a woman speaking of a girl ashamed and strained by the laundry she carries on the bus. And I see my mom there, then, aching and taking days off to not have to, again cross the street with bags and baskets. She bought to own to never again walk or rent or borrow. She works to have the luxury, luxuries she couldn’t have back then, then when Puerto Ricans were beginning to make meaning, Puerto Ricans who form the history I collect. Her life fills up in the margins of those stories, of those whose mark on Puerto Rican Chicago get printed in newspapers, shine in their awards, appear on screens to see. Those Puerto Ricans now, in between arguments and questions, spark her to remember her story. Histories she lived differently, differently for reasons the more I learn from others, the more she reveals.

So I stretch and listen and sit still, waiting, waiting till she’s asleep to pull out the books, to open the pc, to take out the pen and paper to write. Because writing is still needed to heal, to move, to forgive, to let go, to uncover, to remember. But not writing—not writing in those moments I steal from reason, from economy—allows me to say thank you, thank you the only way a struggling writer knows how. By counting the wrinkles in her face, the sighs in her stories, knowing that, in between them, remain moments and movements to keep me writing.

Tag, You’re Ill: My Decision to Wear a Medical Alert Bracelet

In this week’s post, Xan reflects on medical sign equipment and the self through the example of decision-making regarding medical alert bracelets.

I started my year in South Tampa with a dead car battery, a small moment of panic, and a series of tough realizations about my health and life. Turning 32 during the winter break made me reflect on how far I have come with my physical and mental health, and my ability to engage in effective illness management in all of those areas. I have never felt happier to grow older or to continue to challenge myself with new goals for well living, both within and outside of my professional life. At this point in my journey, giving myself those challenges means really moving out of my comfort zone and daring to dismantle some of the boundaries I previously erected in order to feel like I belong.

A curious artifact of my illness experience on which I’ve increasingly focused attention via critical autoethnography research is my staunch refusal to use any devices that obviously signal to others that I am ill.   Despite multiple loved ones and colleagues persistently reminding me that I might enjoy much better comfort in meeting spaces and at community events were I to carry a “donut pillow” to pad my sit bones on hard seating surfaces, I still find the prospect incredibly unpleasant. Reflecting on my reactions to this very intelligent suggestion always brings me to the same conclusion: Although I have built my entire career on using my own experiences of chronic illness to conduct impactful research and outreach on same, doing that kind of work also means that I mostly control the narrative of my disease.

By contrast, using a medical device—however simple or subtle—gives others very prominent evidence that I have a chronic condition, and allows them to form a wide variety of conclusions about my diagnosis and what my life is like. I suppose I have not really changed that much in some ways, because even though I accepted long ago that my own agency is merely a component of the complex social fabric in which I spend my days, I still feel the urge to control as many things in my environment as I can. The idea that I might not get a chance to shape how others interpret my illness still does not sit well with me.

Of course, this notion is problematic in and of itself. Being an 85-pound adult does invite people to draw all sorts of conclusions about what I live with, some reasonably accurate and some remarkably off-base. For instance, in community settings I have sometimes been mistaken for a methamphetamine or heroin user. These situations are likewise uncomfortable, and perhaps drive me to control what elements of the narrative I still can. Perhaps for this reason more than anything else, I have never worn a medical alert bracelet despite having a heart condition as a result of my autoimmune disease. When my potassium levels dip lower than usual, a bit of excitement or panic can make the Q and T waves of my heartbeat spread so far apart that my heart actually stops for a split second.

Long QT syndrome is a tough condition to miss if you know what to look for. Just look for the person who randomly passes out with seemingly no rhyme or reason, only to wake up fully alert moments later. It’s common in people with a history of severe hypokalemia, which often owes to chronic diseases of the mucous membranes and/or kidneys. My own disease is very similar to cystic fibrosis and may in fact be a rare form of CF—genetic tests remain inconclusive. So my whole GI tract is affected, as are my kidneys to some degree.

As a result, my body requires large amounts of supplemental potassium to sustain itself and keep my heart functioning. I’m also hypotensive thanks to a family history of low blood pressure, which doesn’t help matters. Neither does the thiamine deficiency I’ve become vulnerable to because of all the scarring on my small intestine, which in turn can exacerbate heart problems. So I pass out sometimes—when I’m excited, when I’m panicked, when I’m dehydrated, when I’m fighting a virus… I collapse and hit the deck, then wake up a few seconds later, usually with several very confused people surrounding me.

So far, I’ve been lucky. I’ve never lost consciousness for that long—maybe 60 seconds during the worst episode I’ve had to date, where I collapsed at the entrance to a busy store. I’ve never passed out in a place where I would have been in danger physically. I’ve fainted in showers and living rooms, in quiet parking lots and in my partner’s arms. I’ve never gotten a concussion, never broken bones from the fall. When the fluttering starts in my chest and I start to feel my body lifting off from the ground, as if I will finally fly away from the pain it has caused me, I know what’s coming and I let it happen. I just crumple like a marionette with slack strings, folding gently to the ground. I relax and keep my body loose to minimize my chances of getting seriously hurt.

I also try to calm myself during moments of panic so things do not progress to that point—a lofty challenge when I am still figuring out how to live well with PTSD, but one I conquer more and more with each passing day. And when I invariably wake again, still in the same body with all its same foibles, I try to make light of things and share a laugh with anyone who has come to help. But it isn’t really funny, and on the few occasions this has happened in recent months, I have increasingly felt that the joke may be on me. I reflected on all of this as I lay on the pavement outside our apartment in Palma Ceia, cold sweat on my brow and heart fluttering beneath my ribs. My partner stood above me, hand on phone in case this would be the one time where I did need an ambulance. I blinked, vision coming back into focus, looking up at my partner with a sheepish expression.

I should probably get a medical alert bracelet, shouldn’t I. My partner looks down at me, arms crossed, eyebrows raised. Uh-huh. I accept help getting up, which represents substantial progress in and of itself. This is gonna be an adjustment, I say. I don’t usually wear anything that would tell people I’m sick. I know it’s kind of obvious but I have this illusion that I control the message all the time. And this makes it obvious in a really big way. I guess I’m just gonna have to be okay with it. I want to be around for a long time and that’s not going to happen if some well-meaning paramedic shoots me up with adrenaline because they think I’m a drug user who has overdosed. My partner relaxes and listens, satisfied that my usual mile-a-minute sharing of my thoughts means I’m doing all right.

I let my partner find me an auto parts store nearby that will replace the battery and send me on my way back north to get started with spring semester teaching. We watch through the store windows as the old battery comes out and the new one goes in, me talking endlessly about the significance of deciding to order a medical alert bracelet. I talk about what I’ll engrave on the back. I already know I’m going to get one with rear engraving—my compromise with myself about discretion and narrative control. I think about my bracelet the whole drive home: what it will say, what it will look like, how I will wear it. I think about getting a wallet card to hold all the other information I cannot possibly fit on a bracelet that might be of use to first responders.

I think about how I’m going to talk to my parents about all of this. They know I have “a little long QT”, as they like to put it. But they don’t really know that it still flares up sometimes, even with my potassium and thiamine levels managed with supplements. I debate just not saying anything, to them or my colleagues or anyone else. And then somewhere between Tampa and Tallahassee I decide that I’m just beyond sick of hiding, of erecting these arbitrary boundaries in a life where my illness is already common knowledge because I think somehow they will protect me, allow me to keep control of a body that has been killing me since the day I joined this world. Perhaps I’ve finally realized that if I behave like a prisoner of my body, I become one. Controlling the narrative doesn’t give me the kind of freedom that I once thought it might. I suppose I’m beginning to feel okay with just how much I cannot control in this body, in this life.

Back at home, I spend hours researching different bracelet options, settling on a professionally engraved tag for which I can make my own bands. I’ve always loved bracelets—a signature part of my aesthetic for years—and figured that would be a good way to make the experience less intimidating. It is a whole new world of scary, even if you’ve been very open about your illness for many years as I have and even if you have made it a huge focus in your career, to put it right there on your arm for anyone and everyone to see. A “scarlet A” of sorts, a piece of sign equipment branding you as different. I thought about this as I deliberately chose a tag design with a black caduceus symbol. Then I spent several hours mulling over the engraving content—making notes, stepping away, coming back to it, revising. If I was going to put the core of my life on my wrist to speak for me at times when I could not speak for myself, I was not going to take the process lightly.

My medical alert tag arrives in the mail a couple weeks later, and I make a simple band for it with supplies purchased from a craft store. I begin wearing it the next morning. The tag is a simple steel oval with a black caduceus symbol on the front side, and on the back several lines of engraving:








I’ve accepted that this is something I need to do to live the best life I can. I’ve made every effort to ensure that I will be happy to wear the tag every day, customizing the band exactly to my liking, ensuring that I’ll have no excuses to leave it behind in a drawer. I’ve also accepted that I still have the freedom and agency to tell people who I am, both within the context of my chronic illness and outside of it. I won’t become a walking stereotype just because I wear a medical alert tag. I’m still me, which entails living with a chronic condition but hardly ends there.

I also have peace of mind from knowing that something so small and simple can advocate for me when I cannot speak up for myself. So do my parents, who nod sagely and say I’m making a smart choice when I tell them I’ve decided to start wearing an alert bracelet. So does my partner, who quietly breathes a sigh of relief over the phone when I say I’ve ordered the tag. I’m not usually much for New Year’s resolutions, but I feel good about making and fulfilling this one. Since the tag arrived, I’ve worn it proudly—hanging a lantern on it, using it in my teaching and community outreach, the same way I’ve done with so many other elements of my illness experience. It’s just one more way of writing where it hurts.

Beyond White Canes: Translating Experiential Learning into Student Support

Building on last week’s post, this week Xan Nowakowski explores importance of supporting and including students with different functional and ability statuses in our research and teaching.  

In my last post honoring White Cane Day, I shared some experiences from my childhood and adolescence that helped me to think about how people with blindness and visual impairment may experience life, as well as the broader importance of taking a proactive approach to accommodating students with disabilities. Today I’ll be sharing a story from early in my teaching career that highlights prejudices and misconceptions students with visual functioning differences often face, ways to address and remove those barriers, and benefits of creating inclusive environments for learning.

I got interested in issues of functioning and accommodation from a young age because my mother, a neuroscientist with multiple forms of visual impairment, helped me to learn about disability both within and outside of educational settings. My own experiences with loss of physical functioning later in life also contributed to this learning, and to my ability to put thinking into practice. These experiences also helped me to understand the rights and responsibilities outlined for students and educators in the Americans with Disabilities Act, first and foremost the idea that people are entitled to “reasonable accommodations”.

So when a graduate student I had just spent 10 minutes on the phone with about participating in a research project sounded hesitant and nervous the whole time we were on the phone, and then said “there’s something else I need to tell you” in a hesitant tone after I expressed enthusiasm for working with them, I certainly didn’t expect the next words out of their mouth to be “I’m blind”. I hadn’t assumed that they could or couldn’t see—this was the first time I’d ever spoken with them—but blindness didn’t seem like a reason to worry that they wouldn’t get the opportunity to participate in research. One of the best scientists I knew had significant vision impairment, and they worked in a highly visual field of study! I had friends with no light perception at all who were engineers, computer scientists, teachers, lawyers, artists, and so much more.

I stayed silent, waiting for the rest, waiting for them to tell me why their blindness might be a barrier to participating in my project that couldn’t be addressed through accommodations, turning the question over in my mind and coming up with nothing. Finally I said, “Okay…I’m sorry for sounding so obtuse here, but why would that impact my decision about working with you?” The silence that followed seemed to stretch on forever before they said “You don’t see that as an issue? I mean, I can’t see *at all*. I have no light perception.”

I didn’t want to dismiss their read on the situation, so I tried to affirm their concerns while also assuring them that they’d be fully accommodated and included. “No. Should I? I’m thinking about what kinds of challenges here could prevent you from participating, and I just don’t know how we wouldn’t be able to work around each one. If you need transportation, that’s easy—you can just ride with me when we go out into the field. If you need assistive technology that you don’t have already, I’ll get it for you or partner you with another student who can do the looking while you do the talking. If you need directions on how to do things that don’t require visual input, I’ll give them to you. And if I screw up any of this, you can be blunt with me about that and I’ll make any needed adjustments.”

My student sounded a little gobsmacked, but accepted my invitation for them and their guide dog to meet with me at my office and get started on the project. I then sent them an email with detailed directions using non-visual landmarks to help them navigate my office building—things like how many paces it takes me to get from the main door to the hallway from my office, when they’d hear a water fountain running, when they’d feel a vent blowing on their face, what the carpeting near my office would feel like beneath their feet. They showed up early, accompanied by a black Labrador Retriever who curled up at my feet while my student and I talked. We went over the key activities for the project, and talked through how we’d approach each one. They showed me their Braille translator, and all the features they liked to use on their computer to read screens and create documents. To this day, I have yet to work with a student who creates clearer or more concise PowerPoint presentations.

My student explained to me that this was a new experience for them—to have a professor show enthusiasm for working with a blind student. This troubled me deeply, and I asked them to promise that if they ever felt even a bit marginalized while working with me, they’d tell me. “If you’re left out in any way,” I stressed, “that’s my problem, not yours, and I have to take responsibility for it. It’s my job to think about what an educational experience is going to be like for you and plan accordingly.” They shook their head. “That’s just it,” they said. “You’re never going to make me feel left out. I already know that. You’re different. It’s like…well, those directions you gave me. It’s like you know how the world feels to me.” Then they paused. “Is that because you have visual impairments too?”

I thought about that for a moment. “No,” I said. “But my mother does. She’s a scientist who built her career on doing incredibly precise and detailed visual tracing of cells in the developing brain. She perceives light, and she uses some different technology than you do, but I learned enough from her to use my imagination. It’s not that hard to close my eyes and think about the input I’m getting from my other senses. And while I don’t have vision limitations myself, I’m losing function in my hands because of an autoimmune disease.” I asked if I could shake their hand, felt them flinch at the icy quality of my skin. “Cold, right? I don’t have much circulation in my fingers. Sometimes they won’t grip and sometimes they freeze up so I can’t use them at all. So I know what it’s like to have a disability and feel terrified that you won’t be able to finish school because of it.”

This seemed to put my student totally at ease, and we got down to real talk about our health conditions and the journeys we’ve taken to manage them. My student showed me one of their glass eyes, painted to exacting perfection. They told me about some of the absurd stereotypes about blindness they had encountered on campus. I thought the strangest one was the anger people had shown when my student wasn’t using a cane to navigate the sidewalks, as if it were their responsibility to wear a sign announcing to the world that they had no light perception. “I’m not about the cane. I have one, but I don’t use it much. Things are so much easier with my dog, so I bring her anywhere I can. And sometimes I just use my hands to navigate. It really depends on the situation and how I feel that day.”

We went over the survey quickly, and agreed to meet up at the formal training for student assistants in a couple of weeks. Having a non-sighted student participate in the project turned out to be a huge win for our team, as well as for their own confidence about what they could accomplish with their graduate degree. Other students didn’t miss a beat, making sure that walking paths in the classroom were clear while also not pushing any assistance that wasn’t desired. My student came prepared with Braille versions of each survey and showed them to the other research assistants. Partnering up wasn’t necessary when the time came to do data collection—we arranged piles of the two surveys at 9 o’clock and 3 o’clock at my student’s station, and they used their Braille versions to read the surveys to anyone who requested help.

My student took the lead on developing presentations to share our data with the community. We’d been learning all summer about health challenges in Havana, a small town north of Tallahassee, and my student excelled in putting all of the data together in a community-friendly PowerPoint. They worked with our other graduate student, who had more quantitative training but did not enjoy qualitative analysis or making presentations nearly as much, to get some statistics for the slides. Both students were invited to speak to the community, but only one accepted—my sighted student hadn’t found their comfort zone yet with public speaking, so I let them take the lead on writing a research report instead while we went out and talked to area residents.

At the meetings, participants were enthralled by the Braille notes my student used to present our results and get feedback from the group. Several people mentioned that it made them feel more comfortable talking about their own health challenges to meet researchers with different functional limitations and chronic conditions. What was a disability in a technical sense became an opportunity in a social one—an indication that people could speak openly about their own experiences without shame or judgment. I had seen this time and again in my own work, but my student said it was a first for them. “It had better not be the last,” I noted. “Your professors and employers have a responsibility to accommodate you for any task that you can safely do.”

It has been a few years since this particular student studied on campus, with or without a white cane. But we have many other students with different types of visual impairments, all of whom go about navigating the campus a bit differently. If you’ve met one person with vision challenges, you’ve met that one person, and you probably met them under a specific set of circumstances where they approached tasks a certain way. Maybe you didn’t know what the world looked like to them, or if it looked like anything at all. But if you asked yourself that question, and really took the time to think about the answer, you performed the most basic task of accommodation and inclusion. As more evidence of that sort of thinking appears on our campus each year, we all have new opportunities to take that thinking to a higher level, and ask ourselves what we can do better in the future.

White Canes and Black Coffee: Reflections on Different Ways of Seeing the World

In this post, Xan Nowakowski discusses the importance of White Cane Day and accommodations for students and scholars with different levels of visual functioning.  

I walked into my office smiling last Thursday because change was in the air. It was White Cane Day, and this year our campus was decked out with materials to promote awareness and accommodation for blindness and visual impairment. I smiled because I’d never seen so much activity here for White Cane Day before, and it made me think about other positive changes I’ve been noticing lately to make the campus more accessible for people with limited sight. We’ve installed accessible pedestrian signals that chirp assertively when someone gets near a construction fence or crosswalk. We’ve increased the size and prominence of trigger plates for automated doors, and on some of the signs for classrooms and conference rooms that use Braille text. Hopefully these improvements are signs of good things to come.

Visual functioning has been on my mind a lot since I was very young. Despite having a lot of other challenges with physical health, I have always had strong eyesight. Even during times where my vision was affected by severely low potassium levels or side effects from medications, I was always able to see more than well enough to navigate different physical environments, drive a car, and read written text. But I grew up thinking about accommodations because of what I learned to do for others in my life, beginning at home.

My mother is one of over 85 percent of people with significant visual impairment who have few challenges with light perception. By contrast, only between 10 and 15 percent of people who score as “blind” on current clinical assessments have no light perception. I learned over time that when my mother said that she was “blind without glasses”, she didn’t mean that she couldn’t see at all. Rather, she could see a sort of “big picture” of the world with no details, either up close or at distance.

I watched my mom use adaptive techniques and technologies to complete every task she’d set for herself during the day to her exacting standards. Mom is a developmental neuroscientist by training, and spent about 30 years doing laboratory research and intensive neuroscience education before shifting her focus more prominently to teaching, course leadership, and curriculum development. When I was little, she’d fiddle with her top-quality Zeiss microscope to get a tiny section of mouse brain perfectly into focus. Then she’d trace cells onto white paper in red and blue pencil, marking the path of the ones she and my father were tracking as the brain continued to develop.

I always wondered how she achieved that level of precision in her work—how anyone would. And as my autoimmune disease slowly destroyed nerves and blood vessels in my hands, and my ability to use pens and pencils for more than quick tasks along with them, I was hit with the sharp realization that I couldn’t have done her job without the aid of a modern computer. Other things, I could have done more easily. My mother is notorious for making beautifully detailed and labeled slides for her students, which she builds by getting her screens adjusted just right so she can see the text clearly at close range. It’s a simple accommodation that a lot of people make, and that technology has made much more available to people throughout the world.

Mom’s attention to detail is razor-sharp even moments after she wakes from sleep—always has been. It’s what made her a technical wizard in the lab when she first got her start as a scientist. I’d watch her measure scoops of coffee for the percolator, each one perfectly level and symmetrical.   Sometimes she’d tease me for asking her about something visual early in the morning, before she had her trifocal glasses on. Her jokes helped me learn that what seems like a perfectly reasonable question to a person without visual impairment can seem totally absurd to someone whose vision functions differently. The fact that she could measure out coffee to the grain didn’t mean I could just expect her to process new visual information without the right glasses.

As I got older, I met many other people with varying degrees of visual impairment. From a colleague with Down syndrome, I learned that often what prevents people with this condition from living alone is not cognitive functioning challenges, but rather visual impairments that make getting a driver’s license impossible under current law. From a friend with glaucoma, I learned about smartphone apps that make it easy to read and write on a small device. From a friend with Duane syndrome, I learned about different types of special lenses that help to strengthen muscles that support the eye.

I kept learning from my mother, too—when the retina detached in her “bad eye”, when the macula puckered in her “good” one, when the cataracts started to grow from multiple surgeries. Then she had the larger cataract from her former “good” eye removed and we started playing a game called “Camera 1, Camera 2” where she’d close one eye and then the other to make the world appear in white or yellow tones. It felt okay to laugh in those moments. After all, this surgery was the first to improve Mom’s visual functioning, and she actually had to return to wearing an old pair of glasses with a weaker prescription.

Just from watching and listening to my mother over the years, I learned a lot about how people with different types of functional limitations complete tasks and solve problems. I also learned a tremendous amount about how to start constructive discussions surrounding ability and disability, and create inclusive environments for learning. Mom won several awards over the years for her work in medical education, and her office was constantly filled with students seeking help negotiating challenges in the classroom. She’d share some of these stories with me, never naming any names but making sure I understood the basics of each case.

Always the educator, my mother would ask me how I’d handle accommodations for that student if I were teaching the class. We’d talk about all of the different intersecting issues in providing reasonable and helpful accommodations: fairness to students with accommodations as well as other students, responsibilities of professors versus those of students, current laws and school policies about accommodations, social responses to people with disabilities, and much more. I didn’t know it at the time, but the education I received from my mom about disability and accommodation would become a very important resource for my own teaching activities later in life. Indeed, it would become a cornerstone of my approach to student engagement. In my next post, I’ll discuss some of the ways in which these early-life experiences have helped me create opportunities and remove barriers for students with blindness and visual impairment.