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:

 

AUTOIMMUNE DISEASE

LONG QT & HYPOTENSION

MULTIPLE MEDICATIONS

INFO ON WALLET CARD

J (SPOUSE): XXX-XXX-XXXX

 

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.

Incorporating Underrepresented Populations in Teaching and Research

In this post, the Write Where It Hurts editorial team reflects on their experience advocating strategies for teaching to and about marginalized populations often left out of mainstream educational materials, research protocols, and data sets (see our recently published Teaching Sociology article on this topic here) in hopes of facilitating dialogue about the incorporation of marginalized and otherwise underrepresented populations in teaching and research.

As people who belong to, write about, teach, study, and engage in advocacy related to varied populations marginalized or otherwise often left out of mainstream education and scholarship (i.e., donor conceived people, adopted people, transgender and non-binary people, people managing chronic physical and / or mental atypical experiences, etc.), we have become intimately aware of the limitations or missing elements within much existing scientific data and educational resources. At the same time, we know all too well the structural and ideological barriers that slow alteration and revision of existing educational rituals, traditions, and structural patterns in concrete settings. As we did in our recently published Teaching Sociology article focused on strategies for inclusive teaching about gender via the use of survey data that often does not explicitly measure the gender diversity of our shared world, we would like to encourage our colleagues to consider strategies for overcoming existing structural and ideological traditions in hopes of continuing dialogue about methods for creating greater diversity and inclusivity within and beyond scholarly and educational materials.

As we note in our recent article, many data sets called “representative” and used to make far-reaching claims often do not contain and / or do not explicitly measure people like us. If, for example, Xan seeks to learn about social patterns related to donor conceived or agender people, such data sets offer no answers despite the use of such data to “represent” national or other whole populations. Likewise, if J seeks to learn about the experiences of transgender, adopted, or sexually fluid people, all ze will learn from data is that such people are not part of the representation of this society. Similarly, if Lain seeks to ascertain attitudes concerning or held by genderqueer and / or bisexual people, most data sets called “representative” will only offer a “representation” wherein such groups do not exist in any identifiable manner. Despite these “missing” populations, researchers, teachers, and advocates will often utilize these sets to make claims about, for example, families, gender, and sexualities that – we would guess unintentionally – ultimately reproduce existing power structures as well as the marginalization of the groups left out of the official representation contained in the data. In fact, we can see similar problems for other marginalized groups including but not limited to homeless people, neuro-atypical people, and multi and inter racial people despite the use of such data to make claims about housing, mental and physical health, and racial dynamics on a regular basis.

Alongside growing recognition of issues with calling limited collections of people and measurements “representative,” we have heard some advocate doing away with these data sets while establishing more inclusive and diverse forms of data collection, measurement, and sampling. Doing so, however, would require massive changes structurally, ideologically, and institutionally, which will likely take much time, debate, and discussion to accomplish. At the same time, we have heard others advocate for maintaining existing practices or rituals while seeking to explain away the limitations or problems with existing data collection, measurement, and coding practices. Doing so, however, would require accepting the ongoing marginalization and erasure of many sections of the population from official representations. In our article, we propose a middle ground between these two extremes wherein we utilize the existing limitations to illustrate important patterns, power dynamics, and structural issues in contemporary society while continuing to push for revisions in existing data collection, measurement and sampling procedures and encouraging scholars, teachers, and others to talk about such data sets in more inclusive ways within publications and classrooms.

With this information in mind, we invite dialogue, commentary and discussion on strategies for inclusive teaching with existing data limitations and issues. Whether one seeks to join this conversation on this site or in relation to our call in Teaching Sociology or in any other space, we invite and appreciate other educators’ perspectives on these matters. To this end, ask yourself what do we say to unrepresented populations when we call data sources devoid of their presence or measurement representative of our world? What institutional and structural steps might we need to take to make our data sources and educational materials more inclusive of marginalized, underrepresented, and otherwise “missing” populations? Why do we push so hard for generalizations instead of seeking to empirically map the complexities, nuances, and diversity of our shared world, and is this pursuit of “representative” or “generalizable” claims worth the potential negative effects such practices may have on marginalized populations? While we will not pretend to have some “right” or “absolute” answers to these questions, our experiences to date within and beyond classrooms tell us these questions might be incredibly important and useful in many ways. Thus, we encourage members of our intellectual and activist communities to engage openly in these (admittedly challenging) conversations in order to move us closer to truly understanding the complexities of our social world and challenging the inequalities that exist within it.

Experiencing Gender Variation

Last week, J. Sumerau discussed the development and ongoing recruitment for the Transgender Religion Survey. In this post, J. discusses zir own gender experience, and the importance of amplifying the voices and experiences of gender variant people.  

It has been over two decades since I first heard the terms crossdresser and transsexual. I still feel a smile creep across my face anytime I hear or see these words today even though I rarely use them anymore because once upon a time they gave voice to something I did not yet know how to talk about or make sense of about myself.

As part of an ongoing effort to amplify and document gender variant experiences and voices in scholarly and public discourse, I will use this post to briefly discuss some ways I experience my own gender variation. In so doing, however, it is important to note that my experience is only one of a vast multitude of diverse ways gender variant people experience themselves, sex, gender, and other aspects of this world (for more examples readers may want to start by checking out a new book called Trans/Portraits or other posts wherein people discuss gender variant experiences and options online). In other words, the voices and experiences of gender variant people are as broad and diverse as any other broadly labeled population I have come across to date, and my own experience is only one possibility within this much broader population. I thus offer my own experience as a compliment to ongoing efforts to more broadly disseminate the variety of gender experience throughout our contemporary social world.

Recognizing the diversity and variation within and between gender variant populations is especially important in my case because my own experience fluctuates regularly between various ways people experience gender. For example, there are people who experience more permanent forms of biological and / or social transition as imperative, necessary, and essential to their health, happiness, and well being. As medical research continues to demonstrate, these people need and deserve access, support, and resources for transition, and should be encouraged and affirmed in their transition endeavors at all levels of society. Across the spectrum of gender possibilities, there are people who experience more permanent forms of biological and / or social transition as unnecessary or optional for their health, happiness, and well being in this world. In such cases, the ability to safely transform their appearance, demeanor, or other facets from day to day or within any other time frame, in given circumstances, or in varied ways across the life course represents the gender experience in need of encouragement and affirmation. There are also many variations and nuances people experience between and beyond these two options. Whether one exists on either end of the spectrum I utilize above or somewhere in between or beyond this spectrum in terms of gender, (to me) the core of these experiences lies in the pursuit of autonomy for all people regardless of how they identify with, experience, and make sense of sex and gender in their own lives.

This vast spectrum of gender possibilities is something I confront every day because I tend to fluctuate back and forth between the two options I elaborated above. On some days, I am certain that I will fully transition biologically and socially at some point, and I will spend time looking over the options, researching doctors and procedures, and drawing inspiration from emerging narratives shared by people who transitioned at various points of the life course. At such times, I am certain that I need to transition to be fully satisfied in myself and my life, and I am incredibly grateful that I am lucky enough to have a life partner and close friends I can talk to about how I am feeling, transition plans, and how we will collectively navigate transition processes. On other days, however, I am equally certain that I will never fully transition biologically or socially, and I feel very happy about my ongoing back and forth between masculine and feminine appearances, dressing or otherwise appearing as various gender when I go out at varied times, and my efforts to blend varied elements of myself on any given day. At such times, I am certain that I should not biologically or socially transition in full because fluidity is the road to my own satisfaction, and I am equally grateful that I am lucky enough to have a life partner and close friends I can talk to about and show my fluidity without any pressure to “be only one thing” at any given time.

While the two aforementioned types of days allow me to recognize and appreciate the experiences of people who experience gender in each of these ways, there is unfortunately a third type of day. On this third type of day, I feel torn apart and lost within competing desires to be fluid and to fully transition at the same time. On such days, someone will call me mam or sir depending on my appearance and how they interpret that appearance, and I will want to scream, cry, or disappear because such moments remind me that I do not exist for many people in our world at present. On most such days, I hide in my home to the extent that I can or only go out at night when there are less people around to misgender and / or cisgender me by trying to fit me into their own assumptions and expectations. When I have to go out on such days, I find myself shaking inside and frightened every moment I encounter another person. At such times, I am certain that I need to transition and I am certain that I should not transition at the same time, and I realize all too clearly that I am only free and safe when I am alone or with my life partner and close friends who do not expect me to be a certain type of thing all the time or at any time, but rather help me to manage this type of day anyway they can.

These three types of days repeat throughout my life, and have for a long time now. In the midst of the first type, I see myself in others who seek to and / or accomplish transition in a world that has set numerous unnecessary barriers in their path, and attempts to erase, negatively mark or define, and punish our existence in this world. In the midst of the second type, I see myself in others in search of the freedom and safety to vary who they are in a world that seeks to box everyone into one static option, and often only offers fear, shame, and other forms of punishment for those who refuse to conform. In the midst of the third type, I just try to remember the few experiences I have had in explicitly gender neutral spaces where static, fluid and everywhere in between are welcomed and affirmed, and imagine what our world might be like if such spaces were much more common while I try to feel better about the ongoing battle inside me. In all such cases, however, I am confronted by just how much gender matters to one’s experiences in every facet of our current social world.

This observation especially hits home every time I notice just how differently I am treated when I appear feminine to someone and / or appear to not quite fit “feminine or masculine only” to someone else. In my case, the latter is a much more common experience whereas the former typically happens in darker environments and / or when people approach me from behind while interpreting my long hair, clothing, and / or body language as indicative of a feminine self. The difference in treatment when one is interpreted as masculine and when one is interpreted as feminine is dramatic and obvious. Further, the ways one is treated when they are identified as “possibly assigned male” while wearing or acting in a fashion typically assigned feminine are often terrifying and dangerous. Especially as someone who often can be interpreted as assigned male (intentionally or not), I see the disparities long outlined and opposed by gender scholars and activists everywhere I go because I regularly experience privilege and marginalization in varied aspects of my interactions with others depending upon the ways others interpret and assign meaning to my body, my appearance, and my selfhood.

In fact, how I decide to dress or walk or talk on a given day, how people interpret these endeavors, and what type of day from those listed above I am having in a given moment all collectively shape what the world looks like to me from day to day, situation to situation, and person to person. As I noted above, I am actually quite lucky in that I have a supportive network of people who embrace and affirm me in the midst of any of these experiences, and I further have symbolic and instrumental resources due to other aspects of my appearance and current circumstances that also provide strategies for mitigating such experiences. For me, a large part of the push to amplify the voices of gender variant people (as well as people in other marginalized social positions whether they are also gender variant or not) lies in doing what small part I can in the ongoing pursuit of such support and affirmation for the many people who do not have access to such networks or other important resources at present. As we have learned in relation to many marginalized communities over time, broader recognition of the existence and experiences of diverse groups often helps facilitate better understanding and acceptance of such populations over time. As someone who remembers learning that neither sciences nor religions appeared to either know I existed or have anything positive to say about my existence not so long ago, I think an important step in moving forward involves documenting and amplifying gender variant existence, and the multitude of ways people identify with, experience, and make sense of sex and gender throughout our world.

In my own case, the above offers a snapshot of my experience. I typically identify as a transgender and / or non-binary genderqueer depending on what type of day I am having at the time. In some ways, the use of both terms to capture the variation in my experience is comforting to me. In fact, I adopt a similar strategy when seeking to explain to others my sexuality (i.e., bisexual and pansexual Queer as a recognition of being on the bi spectrum in ways commonly described as pansexual and Queer) and my religion / spirituality (i.e., agnostic and / or skeptical non-believer as a recognition of my acknowledgement that I don’t know or care if there is a higher power or not in ways commonly described as being skeptical of unverified secular and religious claims). In the same way I exist and experience the world between common assumptions about gay/lesbian and hetero/straight sexualities and between common assumptions about religion and nonreligion, my existence and experience of gender lies somewhere between trans and cis gender with an appreciation for and recognition of people who exist and experience this world in relation to other locations within the broad spectrum of gender possibilities.

As a result, I want to close this post with two invitations for other gender variant people regardless of their sex, sexual, religious, or other social locations. First, as an editor of this blog and on behalf of my co-editors, I want to invite any gender variant person in search of an outlet for sharing their voice and experience to submit – anonymously or named – their stories to Write Where It Hurts. We welcome your experiences and perspectives, and will be happy to provide a space for sharing them for those who wish to do so. Second, as noted in last week’s post, I want to invite any gender variant person who is interested to participate in the Transgender Religion Survey. Recruitment continues on the survey itself, and we welcome your voices and experiences with and / or about religion and nonreligion.

For questions or to submit a post to Write Where It Hurts, readers may contact us at wewritewhereithurts@gmail.com

For more information, official survey documentation, and / or to participate in the Transgender Religion Survey, please visit: http://researchsurveyor.com/surveys/index.php?r=survey%2Findex&sid=568681&lang=en

Ripped Pages, Erased words – lessons from the unintended audience

A writer across genres and disciplines, this anonymous contributor is playing the professional field. She is debating whether to continue tenure track pursuits or focus on a career that lets her write what she chooses while pursuing advocacy work. She is grateful for the conversation/reflection that inspired this essay. 

There were two times in my life – once as a child, another as a young adult – where I was asked to destroy my words. In both situations, men asked me to get rid of my words – a journal and a blog. As a survivor of sexual assault and a feminist scholar aware of gendered language and silence, it was important for my own journey as a writer to fully name and forgive how I had responded to write as a result of those moments. I write this to remind myself why I write, for whom I write and to face the fears that have emerged in what I could/want to write and publish.

First, the journal writing I was doing as a 10-11 year old was framed by divorce, moving, death of a childhood friend and grandparents’ return to Puerto Rico. In that time period, abstract thought developing in my brain along with a great deal of loss in my environment creo un sentido de rencor, angustia y resentimiento. I was angry at everyone before I was a teenager. I had been lost, confused and I felt worthless given how much consistency I had lost. That anger was private until an elder read it. After reading it, he demanded I throw my words away because of how disrespectful and hurtful they were to the people I was framing in a negative manner. My words, my private thoughts were not protected because the journal was neither locked nor stored in a secret place. As a child I internalized the idea that my words did not belong to me. Once I ripped out the pages, I started writing fiction. Fiction as escape, as release, as an optimism I would not allow myself to find in an environment until I grew to live comfortably as a lesbian in a city located in the Western United States.

Ten or eleven years later, I was still acting and writing ‘straight’. I was writing straight fantasies, very PG, I thought, and the object of my affection demanded I take down the blog. Written without ever thinking he’d see it, I grew mortified that someone would share it, especially given the greater social context in which my ‘feelings’ for him were shared with him and how long it took him to tell me that someone told him. The person I was writing about yelled at me for how I felt, for writing it down and for publicizing it the way I had. Again, my words no longer belonged to me and I had to get rid of them. I did. Within months, I stopped associating with all involved. The wounds of being uncovered, of leaving and all that neither of us understand of each other’s life lay as an ever-increasing gap between us. Not just for the manner in which something public-private had been shared, but, more specifically, for what I understood that to represent at the time.

In both of these instances, I took for granted where I was writing. As a child, I needed locks and I needed hiding to keep my words mine. The uninvited and unintended audiences wanted to alter/erase my words because of what those words meant to them. Those words were not direct weapons against them. For me, in either instance, the words attempted to explore hurt, frustration, loneliness. The losses and change were overwhelming with minimal outlets available compared to the extent so many were suffering. I wrote as a means to escape, to let go of feelings. To have that taken from me, literally ripped out, informed fantasy writing that would sustain me until high school gave me access to password protected writing.

As a college student teetering on living in truth/coming out and trying to find smaller ways to be different, blogging was a way to connect with a handful of friends who had online journals and remained as invisible as I intended to be. Like in my childhood, I wanted a way to have a journal go with me wherever I was, operating on the belief that I was insignificant enough not to be distributed. It served as a way to explore curiosities, questions, internalized hetero-romantic idealism and other ideas that are of little significance to me now. In those moments, they were growing pains on paper/on screen. Growing pains that were mine. A question emerged that I will address after explaining how I viewed those two moments.

Those writings were a necessary process in my journey. Tremendous loss shaped how I perceived family because of how little control we had over our lives and over the affects of others’ choices on my ability to have, what I thought, was a normative childhood. No one wants to lose so much so quickly. Divorce and death shake foundations. Those I grew to rely on dispersed, and, in that, the grief of various communities – blood and peer – overwhelmed me. Grief transformed to hate because I could not bring my friend back. I could not go back to the house I had lived in for ten years. I did not have childhood friends I played with living next to me. I had more than my uncle had at my age, but that more was not something I would understand or forgive until others’ affluence taught me the power and resilience I had gained in that year of intense loss and change.

As for the online journal I kept in undergrad, I wanted to rewrite ownership of my sexuality. I didn’t think I owned it because – whether a gender or a community – I had spent a lifetime internalizing that my sexuality was not my own. Women grapple with this as much as those who struggle with being queer. I only allowed myself to understand that I had to hide, negotiate and perform resistance to the factors that informed the lack of ownership regarding my sexuality. Because of how new I had been to that community, because of the struggle I had relating to and working with cismen (of color), I was terrified of sharing the complex emotions I had around my body. When I did, I felt I was giving up too much too quickly. It has taken me years of poetry, therapy, and journaling to forgive myself and those young men for how naive we were about bodies, power, sexuality and desire.

The ownership others take over words based on their age/gender internalized authority remains a struggle in many communities. As writers, we each contend with the implications of ownership and measurement exercised by those who use social media to factor into whether one will be hired, published in the future, or deemed socially appropriate because of how in/visible we hope to be and because there are members of our audience we do not know. Reflecting over reactions remains key because there is a great deal we learn from ourselves in the process. Those lessons can, when we allow them to, spur our creative, intellectual and spiritual growth. Neither silence nor censorship will control the audience that thieves itself into the words to which we do not invite them. Neither silence/self-censorship will adequately erase the effects of our experiences. Writing is a choice, a demand for those of us who have born witness to suffering brought on by silence.

The quality of our writing can improve with awareness of how we control what we choose. As scholars, we control that which we are most informed. I take this out of my journal to share on this blog out of a need to forgive myself for who I couldn’t be for myself in moments I needed to express myself while protecting the integrity of my right to feel. As I grow as a writer, protection remains key, which is why I choose for this to remain anonymous for now. I want to control where my writing goes next. I want it to go to a place where, in the future, attaching my names to these words will not cause me nor any of the people in this narrative harm.

Systemic Racism & Why I don’t want kids

In this guest post, David Springer reflects on the ways experiencing and studying systemic racism influence preferences for having or not having children.  David Springer is a doctoral student in sociology at the University of Illinois Chicago who studies race, ethnicity & gender and African American experience. 

At this point in my life, I’ve ended many different friendships and relationships because of racism. It’s a normal part of my life. Often, these incidents begin with comments like “You’re really ________ for a black guy” or “I like you, you’re not like other black people!” I turn 30 in about 2 months, and I don’t have the energy to explain to people why that’s offensive. I certainly don’t have time to explain why I or other black people are upset over Trayvon Martin’s death or his murderer’s acquittal, the Ferguson protests and the Baltimore uprisings. Over the past few years, I’ve come to learn that a big part of experiencing racism is about experiencing loss. It can involve losing access to resources (if you even had access in the first place), losing your humanity, losing your life (literally), and losing relationships. I thought I knew how to handle the latter until this past week.

I ended a completely functional, stable, 2-year relationship with a woman I loved because of racism. She is Asian-American and I’m black, but it wasn’t because of a microaggression. It wasn’t because she thought #BlackLivesMatter protesters were just rabble rousers or because she thought black people would be fine if we just pulled our pants up and stopped “acting ghetto.” In fact, in 2 years, we argued about something race related exactly one time. We ended our relationship because I came to the realization that I don’t want children, and she does. That, in and of itself, is not explicitly related to race. People end relationships all the time because they disagree on whether or not to have children. However, I’d venture to guess that most people who say they don’t want kids don’t cite racism as the reason. For me, racism has everything to do with why I don’t want to bring children into this world.

With the #BlackLivesMatter Movement in full swing and the seemingly endless stream of stories of violence against black people, racism continues to permeate our daily lives. On a personal level, I’m confronted with racism in my everyday life in ways I’ve written about before. I’m also a race scholar, so systemic racial inequality also shapes my worldview. My own research focuses on the ways race shapes the lives of even the most successful, middle class blacks in this “post-racial” society. Between my own personal experiences, an understanding of institutional inequality, and an awareness of how that inequality literally kills black men, women and children every day, you get what scholars refer to as “racial battle fatigue.”

Racial battle fatigue refers to the stress people of color experience when exposed to discrimination. This stress can be psychological (frustration, defensiveness, apathy, anxiety, hopelessness), physiological (headaches, high blood pressure, shortness of breath, sleep disturbances, etc.), or emotional-behavioral (stereotype threat, impatience, increased smoking, alcohol, or drug use, and poor job or school performance). For me, chronic exposure to racism tends to manifest itself though a deep sense of anxiety and hopelessness. Though I know that progress has been made since the Civil Rights Movement and that my own success is a symbol of that progress, I’m also aware of how much that progress has stalled or regressed. On one hand, Census data suggests that black folks are generally less poor than they were before that era. That data also suggests that more of us are going to college and getting bachelor’s degrees, and that the black middle class has grown. Black success, at least on an individual level, is highly visible in our society. President Obama, as many have discussed before, is the most obvious example of this progress.

On the other hand, this racial progress coexists with racial disparities in income, wealth, poverty, unemployment, incarceration rates, housing and education. If black America were a country to itself, it would trail behind white America in virtually every measure of social mobility and life chances. It would have a worse infant mortality rate than many “3rd World” countries, a lower life expectancy than Mexico, a higher homicide rate (per-100,000) than the Ivory Coast, Sudan, or Haiti, and the highest rate of incarceration on the planet. While legally sanctioned discrimination has subsided over time, even successful blacks deal with racism in their neighborhoods, public spaces, stores, and the workplaces. Every day there is a new story of a black person being verbally harassed, followed in stores, harassed by security personnel, or killed by police and vigilantes. At this point, these kinds of stories are expected. I go through a range of emotions when I see these stories – anger, disgust, sadness, etc. But I’m never surprised by any of it. And from where I sit, I don’t have much evidence that it will stop. If Dr. King and the Civil Rights Generation could not stop it, what hope do we have?

I understand that this isn’t a 100% rational reaction. There are many people who are fighting for black lives. And that fight is not always for naught, as the students of Mizzou showed us this past week. Things like this provide some hope, but that hope is quickly tempered by how people reacted to those protests – death threats, terrorism, and general hostility. Which brings me back to having children. When I’m aware of the many ways racism hurts and kills black folks in this country, how can I justify bringing a child into this world? How do I handle the inevitable day when my child gets called a nigger or some other epithet? We live in a world where that’s a virtually a guarantee. So how do I explain that to them? And do I try to give them hope that it will get better, even when I know that probably isn’t true? Do I just “keep it real,” and shatter their innocence? These are the kinds of things my ex-girlfriend and I had to think about. How were we supposed to explain to a child that the police, who they will be taught to see as the good guys and heroes, are often hostile and hateful towards black people? I didn’t really interact much with the police outside of a D.A.R.E. talk here and there, but I can remember knowing very early in life that police didn’t like black people. And when kids are taught that people who hurt people go to jail, how do we explain that when white people hurt us, they’re more likely to avoid punishment? How do I help that child avoid the pain I felt the first time a girl’s parents rejected me because I was black?

These questions are what drive my preference to not have children. Since I was in an interracial relationship, I had to think long and hard about how race might affect a child’s life. And since my ex wasn’t black, many of the child’s experiences would be tied directly to me, especially if that child looked more like me than her. Of course being/looking Asian comes with many of the same problems and discrimination, as well as some unique experiences (“Where are you really from?”). But anti-black racism is, as critical race theorists often argue, a cornerstone of American society. And black people are often viewed as inferior to Asians on cultural grounds. And since I’m the darker one in the relationship, I am aware that the more the child looks like me, the more likely they are to experience discrimination in their neighborhoods, in stores, at school, and at the hands of police officers. Again, I know that isn’t a 100% rational thought. And it wouldn’t be my fault if my child experienced racism. But it would feel like it was, and I’m not sure how I’d be able to deal with that as a parent, let alone how to talk to a child about it.

Comprehensive Exams are a Glorified Hazing Ritual

 

The following anonymous guest post is by a doctoral candidate at a public research university in the United States.  In this post, he discusses experience with comprehensive exams often required for doctoral study, and the ways such exams mirror hazing patterns in other institutions and groups.  

As many graduate students know, comprehensive exams (sometimes also called preliminary exams, qualifying exams, prelims, comps, etc.) are often part of the grad school process. I’m sure I’m not the only person who heard horror stories about such tests from senior graduate students and faculty alike from the earliest days of grad school. The stories from graduate students went something like this:

 

“Oh my GOD. The semester you take the test is the worst semester of your life.”

“Get ready to hate everything when you take them.”

“I mean, people have failed before. It’s been documented.”

“Jeez, I don’t even remember half the stuff from the test, but make sure you know the stuff for the exam.”

“They’re so hard. The worst. Ugh I hate them.”

“Take them seriously or else you’ll have to take them again.”

 

From faculty:

 

“You will seriously need to study. Plan on doing nothing else the semester you take them.”

“Your exams are what first demonstrate that you are going to be a scholar in (area X) of (discipline Y). So you need to take them seriously.”

“You need to remember everything from the readings. Yes everything.”

“People have failed them before.”

“Take them seriously or else you’ll have to take them again.”

 

Now, in my particular situation the students were assigned or selected a certain number of texts to read in order to reflect their expertise in a specific area of the discipline. Then over the course of many hours (sometimes in one day, sometimes in two) they sat in a specified room and typed our responses. Faculty then assessed our responses and assigned a score.  Then, we learned our score, but never saw the test again.

For me, as someone who struggles with anxiety, hearing all of this before taking my exams was extremely disconcerting. As I listened to my colleagues and faculty gush about the horror of the tests I started to wonder why we even do them anymore. Over and over again I heard graduate students and faculty alike reinforcing the notion that the tests need to be taken seriously, that they’re intimidating, horrifying, traumatizing even.

In the midst of all this advice, multiple graduate students repeatedly told me that no one ever asked them about the test in the months/years after completing them, so “just get through it and move on”. Each person I talked to portrayed their method of studying as the way to study for these tests. People shared their “survival strategies” with me in what seemed like an effort to soften the blow of this supposedly horrendous process.

When it came time for me to start studying, I kept all these things in mind: the terror of the test, the embarrassment that would come if I didn’t pass, the stress of being a slow reader trying to get through thousands of pages of texts. I woke up in the middle of the night in a fit of anxiety more than once. It seemed my colleagues were right: comprehensive exams are terrible.

“But why?” I wondered to myself. “Why do they have to be terrible if this thing is just a valorized essay test that no one will ever ask me about ever again in my life once it’s over?” it was during this reflection that I realized that all comprehensive exams really are is a glorified hazing process for graduate students.

And I get it, if you think about it as a hazing process it all makes sense:

The tests are framed as the thing that will make you an expert in a field. This framing reinforces the notion that they are not only important, but that if we all really want to be experts then we need to do really well on them. In reality, a completed dissertation or set of publications is more likely to reflect your expertise in a given area, but pointing this out might undermine the ritual of comprehensive exams.

The tests are vaguely framed as scary and something we need to take seriously, even though most people pass, most programs allow you to take them more than once, and no one will ever ask you about them ever again. This fits the guidelines of a hazing ritual perfectly. If we aren’t repetitively told that the tests are scary then maybe we would see them for what they really are: timed essays shrouded in hype. Also, if students are scared into (over) studying for the test, then faculty can say “you must not have studied hard enough” in the face of someone who does fail. In this framework, failing the test becomes a personal failure, instead of a problem with the structure of the examination, and the structure of academia more broadly. Namely how the structure itself is specifically disadvantageous to neuro-atypical, racial/class/gender/sexual minority students who have been told over and over that we aren’t good enough, will never be good enough, and can’t succeed.

“Surviving” makes you one of the team, and then you get to tell future generations how awful the process is. This makes me think of a friend of mine who was involved in Greek life during his time in undergrad. A few years before he pledged his fraternity, their chapter got in trouble for hazing. As a result, they were under serious surveillance from the national office of their fraternity. The brothers who were seniors during his freshman year were the last pledge class to get hazed and were extremely bitter that the incoming class didn’t have to navigate the same emotionally stressful, degrading, “bonding” activities that they did. To these older brothers the initiation of my friend’s pledge class cheapened the meaning of brotherhood.

Comprehensive exams, as they exist now in many programs, operate in effectively the same way: Faculty and senior graduate students who made it through this format get to maintain boundaries between “them” and “us”, those who are “in” on the knowledge and those who are “out.” They do this by engaging in the same, ritualistic scare tactics that they experienced before they made it through the process, and in so doing justify and reinforce the meaning of their own experiences with the hazing process. Otherwise something that they spent a significant portion of their time in graduate school worrying about might be rendered meaningless.

Once you pass them, they don’t really matter. I took my comprehensive exams. I passed. And I’ve never been asked about them since (with the exception of other nervous graduate students who will take them in the future).

Now, to be fair, I learned a lot while studying for the tests, and it was not a total loss. I also understand the argument that we need to have something in place to make sure that people who are getting PhDs are truly experts in a field. I agree, I’m just not convinced that this format of evaluation is it. I also know that not all programs use this format, in fact some of them have (what I think) are much more useful evaluation methods.

For example, in an academic context where publishing is becoming increasingly more important, why not have students review a specific body of theoretical literature, craft a paper that makes a new theoretical contribution, and then submit it for publication? This format allows students to get the experience of reading broadly and deeply across a field, and the written result of all that work isn’t thrown into a vault where their ideas just waste away. Students could also do an archival research project of all the literature in one or two journals that relate directly to their dissertation topic and give an oral or written (but not timed) defense of that literature. Doing this could help students expedite their dissertation proposals and would give them a wide and deep understanding of their disciplinary sub-field/ fields.

I don’t expect changes to the current format overnight. So while what I mention above are just two potential alternatives to this format, I would like to share some thoughts for students who may be getting ready to take comprehensive exams that look like the ones I took:

Do take them seriously, but remember that they are not the end of the world. Yes, these tests do determine when/if you get to move on in the program, but they are not the be all and end all of your worth as a scholar or a human being.

If your program allows you to take comprehensive exams more than once, think about the first time you take them as a practice round. This is easier said than done, especially when the implicit knowledge around one’s department might be that failing is shameful. However, if you can do this it helps put them in perspective – just think, if you have to take them again at least you will know what you’re getting into. Also, you can spend the semester(s) between the first and second time taking them as a chance to work on your dissertation proposal, and then defend your proposal immediately after you (in all likelihood) pass them the next time.

Hey, senior graduate students and faculty, stop treating failing like its shameful. If you passed, good for you, but just because someone doesn’t pass their first time (or ever) doesn’t lessen their value. Help shrink this as a departmental (and academy-wide) norm. Yes, there might be people who fail because they didn’t study, but it can often be significantly more complicated that that. Again, minority scholars specifically are told their whole lives how likely we are to fail at any time. Instead of reinforcing this logic, work to create an environment where students can do better the next time.

Develop your own studying method(s). In the months leading up to comprehensive exams you will likely be inundated with advice on the best study methods. Really, the best method is whatever works for you. Maybe you audio record conversations you have with yourself about the readings, maybe you make flashcards. You could be someone that needs to structure every hour of their day, or a person to whom that degree of structure feels suffocating. Perhaps you discuss the readings with a study buddy over drinks or coffee, or conversely, you might like to study more solitarily. These and dozens of other methods exist – trust yourself to figure out the one that works best for you and run with it.

Don’t lose yourself. Take some evenings off and hang out with friends (or not), allow yourself to watch Netflix between a reading or two, take a long walk and listen to music – whatever feels like a relaxing activity to you, don’t be afraid to do it. In all likelihood that one evening, or one episode of Breaking Bad won’t make or break your experience with comprehensive exams.

All in all, we could seriously use a critical examination of the pedagogical reason these tests exist in this fashion. For now, though, hopefully this framing will help bring the process back down to earth for folks who will be managing this ritual in the future.

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.

There’s No Manual for This: Surviving Rape Apologists in the Classroom

The following anonymous guest post is by a sociology instructor at a public university in the United States. In this post, she reflects on experiences confronting trauma and rape apologists in the evaluation of student assignments.

When I began graduate training, I was inundated with advice about how to survive in my chosen profession. Specifically, I received tips on teaching – how to grade papers efficiently, how to foster a meaningful class discussion, how to have boundaries with students regarding grade contestations and office hours while also creating a safe space for learning. I was told to try and grade students’ work as uniformly and objectively as possible. I value all of this advice, yet I was left unprepared for what would happen in the future when I taught a gender class.

It was the middle of the semester and we were covering rape culture. As any Feminist instructor who has ever taught about rape culture probably knows, covering this topic is challenging for a multitude of reasons. Sometimes we encounter students who realize that they’ve been raped who come to office hours looking for resources. Other times, students learn that they’ve actually committed rape, and struggle to reconcile this with their images of themselves as “good people” and “not one of those (usually) guys.” And many Feminist instructors, especially those who are women, know all too well what it’s like to navigate the “mansplaining” of a few of the men in the class who would like to ardently deny that rape culture exists. Such students may make claims including but not limited to the following:

In response to discussions about the fact that what a woman is wearing does not give someone license to rape her, nor does the rate of rapes have anything to do with clothing choice: “but don’t you think what she was wearing is at least a little important?”

In response to conversations about the structural barriers to reporting rapes, and the estimated number of rapes that go unreported: “But why wouldn’t she report it? It’s kind of on her.”

In response to demonstrating the staggeringly low rates of “false reports” in contrast with the alarmingly high concern lawmakers, the media, and the general public seem to have with this artificial trend: “How do you know that it’s really rape?”

In response to pointing out that someone is incapable of consenting if they’re intoxicated:  “Well don’t you think she should have been more aware of her surroundings? Less drunk? It’s kind of her fault.”

In response to the fact that we live in a society that valorizes men’s violence against and dominance over women: “Boys will be boys.”

Every so often, however, male students may present a reasonable shortcoming of the prevailing rape culture rhetoric, such as “Why don’t we talk about when men experience rape? How can we make space for that dialogue without pushing aside women’s experiences with rape and systemic inequality.”

This is a valid question, and the inquiry is on point. We need to make space for men (as well as non-binary people) to share their experiences with rape since the foreclosure of such space stems from the very same mechanisms of inequality reproduction that facilitate rape culture in the first place.

When I encountered a paper that began with this question in my gender class, I hoped the student would take the paper in that direction.

He started by citing a media example of a case where a woman on a college campus raped a man, and how poorly the campus responded. However, I first felt a twinge in my spine when I looked up the source of his story and traced it back to a Men’s Rights Advocacy (MRA) group. “Okay,” I thought to myself, “students use terrible sources all the time, often because they might not have the skills to distinguish journalism from something like an MRA group. I’ll give him the benefit of the doubt here and make a note of it for the next paper.”

Unfortunately, his “argument” quickly devolved into a tirade claiming – since he presented ONE case where a man was raped by a woman – Feminism is pointless and women are complaining too much about “their problems.” He wrote that men and women experience rape culture in exactly the same way, and claimed talking about gender inequality was just an effort to make men look bad. He said that women brought these things upon themselves by making people, and specifically men, angry and annoyed via conversations about Feminism and rape culture. He did not even feign a presentation of data to back up his argument after the initial example, but rather, he simply ranted against Feminism, women, and open discussions about the sexual violence women regularly experience.

As I went over his paper, I realized that I was reading a paper that sounded word for word like something my rapist would say. And not only did this sound like something my rapist would say, this student fit the same demographic profile as the man who raped me – White, college male, between the ages of 18-22.

I got up from my desk and went for a walk. I couldn’t concentrate. I had plans to read a book later that afternoon, which were shattered by being thrown back into a pit of traumatic, fragmented memories by this student’s paper. I was furious at the fact that, as an instructor, I was expected to take his paper seriously, and scared of what he might do if he didn’t like his grade. Although I knew it was unlikely that this student would literally try to rape me, his words felt so familiar that I began having trouble distinguishing him from the man that did. Their words were so frighteningly similar that the “rational instructor” side of my brain could not overpower the “trauma survivor” part of my brain.

None of my training or experience prepared me for something like this, not even advice from the few Feminist scholars I have had the pleasure of knowing. I was in a position where I had to take this student’s words seriously, evaluate their merit, and provide a percentile score based on how well I thought they fit the parameters of the assignment.

“ZERO! YOU GET A FUCKING ZERO” I literally screamed at my computer screen. I decided that I wasn’t ready to return to grading papers yet so I got up and went for another walk.

I felt irritated that in two pages of (poorly written) ranting this student was able to undercut whatever authority I thought I had as an instructor. Authority that, especially as a female instructor, I worked hard to establish and maintain. I imagined him sitting on the other side of his computer screen laughing at my pain, joking about my distress. I imagined him being friends with my rapist (though the man who raped me is now significantly older than this student, he is frozen in the 18-22 age bracket in my mind). How, I wondered, could I possibly evaluate this student’s work in an “unbiased” fashion? Such a request would involve me living an entirely different life than the one that I’ve had.

I returned to my computer late that night. I pulled up his paper, took a deep breath, and began to read it again. No one ever advised me about how to grade a paper that sounds like something my rapist would say, so I suppose I will have to train myself. After all, I am certain that I am not the only instructor to have to navigate this dynamic, and I’m sure this won’t be the last time I have to navigate it.

Our Peers, Ourselves: Introspective Tips for Insightful Reviews

This week’s post is the final in a four part series where Xan and J share experience and tips managing academic publication and reviewing.  In this post, Xan provides tips for being a good reviewer.

Hello readers! Xan here again for our second of two posts on peer review. Last week I shared my thoughts on how peer review often goes wrong, as well as some general discussion on how it can go entirely right. This week, I’m following up with specific strategies to help you write awesome peer reviews that will support your fellow scholars in doing great work while also building your reputation as a professional.

Becoming a great peer reviewer is first and foremost about finding meaningful ways to connect with and support your fellow scholars when you can’t show your face or tell them your name. To do this effectively requires remembering one thing first and foremost, which brings me to my first suggestion to help you become the best reviewer you can be.

  1. Remember that today’s peer reviewers are tomorrow’s authors…and vice versa.

We all dream of receiving kind, thoughtful reviews that help us get to the top of our game as writers and thinkers. We can also probably point to at least a few examples from our careers where reviewers did exactly that, regardless of what the journal editor’s final decision was. Those reviews are the real game-changers, yet they are unnecessarily rare. It’s easier to write a thoughtful and constructive review—especially in cases where you have serious concerns about the methods or findings in a paper—if you remember that the authors truly are your peers. It’s easier still if you stop to think that tomorrow the tables may turn, and the same people might be reviewing one of your own papers. Model your reviews after the kind of feedback you yourself wish to receive!

  1. Read every word of the manuscript with care and consideration.

In academia as well as the applied world, we are often required to read and digest huge amounts of text in small amounts of time. This is a great skill to have, but there are some specific ways to apply it that will help you get the most out of a first manuscript reading so that you can write a really dynamite review. Ordinarily I am the supreme overlord of reading electronically, but I never do this for a peer review. Why? Reading in hard copy helps me to savor every word of the manuscript as if I were reading a favorite poem, and to think about all the ways in which I could possibly interpret each phrase.  This is crucial to writing excellent peer reviews, not only because it gives you a phenomenally solid grasp of the manuscript content, but also because it makes giving authors the benefit of the doubt much easier. How many times have you received a review in which you were asked to do something that you’d already done quite explicitly in your first draft—or worse, attacked for not doing that thing? Don’t be that reviewer. Instead, be the reviewer whose comments are accurate and precise. Editors and authors alike will appreciate your efforts!

  1. Take good notes and save them until a final decision on the manuscript has been provided.

To help you make those accurate and precise comments that will get you to the top of your reviewing game, take concise but thorough notes in line with the text that you can then use to write a point-by-point review. I suggest coding these notes with symbols that tell you where in the review to incorporate each piece of feedback.   Your specific system will vary depending on the precise structure you prefer for your reviews, but most editors will suggest that you offer some distinction between major issues with the manuscript and minor points for improvement.

  1. Consider that something being new or different doesn’t automatically make it wrong.

To be clear, major issues are things like conclusions that aren’t supported by the data, unclear relationships between the literature cited in the “front matter” and the content of the later sections, or weaknesses in the research methods that fundamentally call the findings into question. Some things that are *not* major issues include: need for English-language editing services, typographical or grammatical errors, unconventional choices of pronouns or identity labels, etc. Reviews often become a hotbed for microaggressions towards people who differ from ourselves in one or more ways. It’s much easier to keep the focus on the content when you take careful, detailed notes about why you think something is an issue and what you’d suggest the authors do about it. In cases where there really is a serious issue with the research, it’s also much easier to back up your concerns when you have a detailed record of your thinking.

  1. When you feel tempted to pass judgment on something, ask a question instead.

In my experience as a reviewer, for every paper with such severe flaws as to suggest problematic motives on the part of the authors, there have been numerous others with shortcomings owing more to clarity of expression or thoroughness of explanation than to conflicts of interest. When reviewing a paper that raises “red flags” in your mind, think about how you would want a fellow scholar to respond if they had similar concerns about your own work. Would you want them to eviscerate you on the spot for the possibility of your work not being honest, or would you want them to ask thoughtful questions and encourage you to share the facts before passing judgment? Give your authors enough rope to hang themselves. In most cases, you’ll find that said rope quickly becomes a lifeline that can rescue a sinking argument. And if you still have questions after the final version of a paper appears in print, why not write a thoughtful letter to the editor in response, and net yourself an additional publication while promoting constructive scholarly dialogue?

  1. If you make a suggestion, substantiate it with specific strategies and helpful resources.

I don’t know about all of you, but I love those reviews where someone suggests a change and then offers a citation or two to help me make it. That’s a great way to get yourself noticed as a constructive reviewer, and to make a great impact on the final published research. Humans are remarkably like other creatures in that if we can see a path of least resistance, we are likely to take it and do so gladly. Offer your authors a clear path to greatness and encourage them to follow it! To frame your comments, think about the most helpful and encouraging feedback you received from your mentors in school, whether at the undergraduate or graduate level, and try to emulate that. Point out the precise reasons for which a specific item needs improvement, articulate a concrete strategy for making those improvements, and affirm that the end product will be stronger for the authors’ efforts in implementing your feedback.

  1. Know that being a great reviewer means both speaking thoughtfully and listening attentively.

As reviewers and as writers, we are stronger together than we are individually, especially when we take the time to look out for one another as we do for ourselves. This means not only sharing our own ideas, but also taking the time to consider the insights and perspectives of others whose experiences and contexts may differ substantially from our own. So I’ll put my money where my writing is and turn the floor over to our readers. What tips do all of you have for writing spectacular peer reviews? What lessons have you learned during your time as a peer reviewer that you’d like to pass along to others?

We encourage all of you to share your experiences in the comments—let’s make this one of those supposedly rare Internet postings where it actually *is* a good idea to read the comments—and spread that wisdom around to your colleagues. Writing Where It Hurts about your experiences with peer review makes it easier for all of us to review where it helps!