But It’s Heavy: Friendships, Expectations, and Illness

In this post, Xan reflects on the weight of chronic illness, and role of emotions, expectations, and caregiving in the experience of chronic illness and emotion management.  

In my last post I wrote about the fallacy of people thinking I cannot carry things because like many people with cystic fibrosis (CF), I am very thin. “But it’s heavy!” strangers will say. “You can’t possibly carry it all by yourself.” If only they knew. I manage just fine with heavy material objects, provided they aren’t especially large or unwieldy. No, the heaviest burdens I carry are those unseen to others.

Knowing the data, knowing people with your condition have an average life expectancy in the high 30s range, constantly explaining “well it’s really a bimodal distribution differentiated by access to care and a bunch of contextual factors” to wide-eyed people whose eyes well up with tears because it’s too hard for *them* to handle to know you are sick. Now *that’s* heavy. I spend so much time explaining things that people could Google, so much time bending over my phone responding to messages asking if I’m okay when what people really want is for me to make *them* feel okay. My neck has begun to hurt from the weight of my head literally dragging me down.

So now I’m holding my phone at 90 degrees to my face, stretching my neck and thoracic muscles, asking myself tough questions about why I’ve always swallowed whole the assumption that it’s my responsibility to do the emotional labor of coddling people in my life under the guise of helping them get educated. It’s never the people closest to me who ask for this. They know better, or they wouldn’t have gotten so close to me in the first place. Asking how I am is kind and affirming. Using that question to spend the next 30 minutes gobbling up all the emotional support you can from me about how hard my diagnosis is for you and how much it scares you…is not. It literally weighs me down.

Being open about your fears is a tremendously good thing in and of itself. It’s where you seek support in coping with those fears that matters. This isn’t black and white; it’s a question of nuances. Ring Theory offers a good way to understand socially affirming flows of emotional support, using a simple algorithm of “comfort in, dump out”. The basic idea here works like an earthquake. The person dealing directly with the challenges at hand (terminal illness, loss of a loved one, sexual assault, etc.) dwells at the epicenter. Then shock waves radiate around the epicenter with progressively lower intensity as distance increases. A life partner feels them most intensely, followed closely by other family members who are close to the person. Then come very close friends, then other friends and colleagues in a much bigger ring, and then casual acquaintances.

I’m a pretty textbook long-surviving CF patient in many ways, including both all the issues I do experience and what has heretofore been more minimal involvement of the pancreas. Whether I have any pancreatic involvement remains unknown, because I definitely have some bizarre endocrine symptoms these days. I just keep coming back to the fact that I had low-positive results on a sweat test *and* so many of the core clinical signs of the disease and nobody gave a damn. Why was my case dismissed when my parents kept fighting so hard to get me medical care? Why did I have to be treated in fragmented little pieces by specialists focused on this or that organ? Why did I have to undergo surgery to rebuild mucous membranes that could have been reasonably well protected by drugs that were already on the market? These questions pull me down like heavy stones.

I see a CF specialist tomorrow for the first time in my entire 33 years of life and these questions spin through my mind constantly. And I feel the lingering fear that this doctor won’t believe me either, that I’ll now be caught in a terrible limbo of knowing I need a specific type of care yet being just as unable to get it as when I had more questions than answers. Maybe I still have more questions than answers. I spend most of my time trying to answer other people’s questions, though. And it has exhausted me so thoroughly that I feel empty inside, as if my disease consists more of the need to justify it and reassure others than of its terrible physical mechanics, which I wind up with little cognitive space to consider. I go to bed each night feeling as if the day has drained all the life from me, questions racing through my mind in the darkness that surrounds.

I don’t have any real answers. I wish desperately that I did, but I don’t, and I often feel as if I’ve failed the people in my life because of that. All I have is a lot of lost time and an opportunity to do things differently with a doctor who stands a chance of understanding my case and my needs. So…to be continued. I’m excited about meeting with the specialist. I try to Be Positive in all things. But there’s so much beneath the surface, and it feels exceptionally heavy today. So I strive to grow more proficient and comfortable in asking others to shoulder a piece of that burden, not my grocery bags or guitar equipment. For it’s the invisible weights that bring us down the hardest.

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On the Dubiously Accessible Caste System of Conspicuous Fitness

In this post, Xan reflects on relationships between consumption and fitness while placing these cultural patterns within the context and perspective of people managing chronic conditions.

Recently the New York Times published an article about outcomes from wearable fitness devices. The takeaway from this article was that “Fitbits and Apple Watches and the like may have their uses, but they don’t appear to be effective in weight loss.” No surprises there. I’ve always looked at these devices as part of a culture of “conspicuous fitness”, in which folks manage their image more than their health.

I do like that these devices often encourage people to view activity as a continuous spectrum rather than a dichotomy of active vs. inactive pursuits. But most folks who wanted a life with physical activity integrated into the process of doing other things, like getting to work or shopping for groceries, were probably already doing that stuff. Plus, expensive devices really don’t target demographics of folks whose activity may be more limited by environmental factors like street safety and air quality.

The whole “conspicuous fitness” thing also seems alien to me because of the aggressive norming of how we perceive people as “fit” or not. I’m never going to be running marathons–which the literature suggests is probably not that great for you anyway, but I digress–or climbing mountains. But I have good strength and work to maintain it. I like to walk, either alone with some music or sharing time with my spouse. I like to dance at concerts and at goth clubs when I go.

And then there are the can’ts. I can’t run or ride a bike for long distances because the cystic fibrosis (CF) has attacked my joints, so anything causing impact or intense repetitive stress is decidedly off the table. I can’t swim in pools because I get pseudomonas infections easily and the chlorine plays havoc with my skin. I can’t go hiking in places where there’s no restroom access–peeing in the woods is well and good, but other things not so much. I can’t go waterskiing or do other stuff where I can’t use a bathroom at a moment’s notice.

I don’t mesh with the picture of “fitness” in many people’s minds, yet the work I do to keep my body strong–and how I integrate it into the bigger picture of my life–makes a big difference in my ability to live well with such a pervasive disease. People often think I’m frail. I wrote a publication about it. People don’t think I can kick some ass if I need to. My first paying job was teaching karate classes for junior students. People chronically underestimate me. They try to keep me from carrying my own groceries, from moving heavy things. The element of surprise never seems to lose its power.

I define “fitness” as part and parcel of my own continuous process of illness management, in which I adjust daily to nuances in the challenges of living with CF and its consequences. My disease and how it limits me seem as normal to me as the ways in which CF does *not* limit me. Walking down the street, legs in rapid swing, feels about as normal as it gets. But this activity gets read differently if I wear the sheath dresses and blazers I favor for work, or my weekend jeans and band T-shirts, versus spandex leggings and trainers.

I’m never that person cruising the produce aisle with workout gear and an mp3 player strapped to my arm. I have no interest in being that person. Trying to convince the world that my body conforms to preconceived notions of “fitness” would be an utter lie. I may be relatively strong, but I’m not *vital*. Article after article flying through my social media feed chirps that “fit” people don’t feel tired all the time. What goes unsaid is that many of these journalists never bother talking to people living with chronic diseases that impact our mobility, our activity choices, our energy.

Which is a shame, because you’ve got to be pretty damn fit in a number of ways to function at a high level with diseases that constantly attack your body from the inside out. Doubly so if you want to keep your independence, something many of us cling to like a life preserver, as if it is the only thing holding our mortality in check. Sometimes carrying our own groceries or wrangling heavy equipment feels like all we have. So all of this got me thinking about perceptions and reality, and about the nature of heaviness when you carry a ponderous burden everywhere you go. And that is a topic for a separate post.

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Sidelined: Contraception Side Effects and Gender Inequity

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

THE PERSONAL MEETS THE PROFESSIONAL

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

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

THE PROFESSIONAL MEETS THE PERSONAL

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

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

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

OUR BLURRY AREAS NEED SUPPORT STRUCTURES

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

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

SUGGESTIONS FOR NAVIGATING THESE MURKY WATERS

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

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

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

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

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

In loving affirmation and solidarity, always.

Jay A. Irwin, PhD

Associate Professor of Sociology

University of Nebraska at Omaha

 

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

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

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

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

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

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

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

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

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Limits of Doctoral Education – Hunting for Public Aid

Erika G Abad, PhD, received her American Studies PhD at Washington State University in 2012. Since then, she has worked as a customer service associate, a scheduler, Caddy Head Counselor, Field Director for a policy education campaign, Farmers’ Market team member and oral historian–in that order–since completing her degree. She is currently a regular writer for Women in Higher Education and will be starting teaching full-time this fall. 

Writing this as a PhD is hilarious, in the midst of so many narratives regarding PhD poverty. Unlike those, however, I approach the conversation cognizant of my choice, my white collar poverty’s flexibility of time and of the systemic issues at play.

When applying for affordable care act (ACA) mandated insurance last April, a friend walked me through process, as he was employed by a grant specified to educate new participants. I picked my insurance, made the consistent monthly payments. From April 2015 to January 2016, income has changed, creating the possibility to qualify for public aid. This is the amusement of millennial scholars, and the heartbreak of parents and families who hoped a quality education would keep their progeny from the ‘shame,’ and stigma of relying on ‘government handouts.’

Chasing Eligibility

The millennial scholar amusement, that despite being a generation removed from limited education, two generations removed from the ability to read and write, those skills and assets do not secure a better income. And, the varied jobs I have had outside of (higher) education, reinforce the freedom to choose to live this way. It’s a commitment to the dream issue, which I have often questioned, much like I struggled with believing in the democratic necessity of a liberal arts education. The experience both with ACA and most recently, public aid eligibility paperwork, has brought that to light.

I begin writing this reflection in the midst of trying to assess where my paperwork is. It’s January, nearing the deadline, and the last thing I need is to be penalized for something that I can’t control and something that I did. In other words, I have submitted the paperwork, waiting for a response could cost me eligibility and any assistance, so I stop working to primarily address this issue. I stop working to call the series of north side offices where I would presume my file could be. During the first call, I connect with an immigrant woman who, assuming I work for the office, begins to explain her case. In the middle of her narrative, I say, “I don’t work for the office, it seems they connected us.”

“I must have pressed the wrong number,” she says. I smile to myself and say, “it may just be a glitch, try calling again.” Here, my educational-based privilege starts to sink in and I say, ‘shit,’ if they connected two clients together, what’s it like in the office?

That Friday’s phone call was preceded by conversations on Wednesday, and, on Thursdays, finally learning how to log on to get my pay stubs. Working class income, not wages, nor time limitations as a result of being a community-based researcher. The catch-22, the irony of PhD’s trying to find a way to stay relevant and competitive in an incredibly tight market. Changing is not that easy, by the way, because those other jobs where we could easily transfer our skill sets, see the PhD doesn’t have to stay. Cynical, yes, and a reminder education-based privilege has its limits.

So, that Friday, I am reviewing the list of numbers to call. The one on the mailer, the one I was told to call because that office did not, supposedly, have my paper work. So who else has my paper. The woman at the second office said she would call me back. I cannot get an operator on the third number I call. This is a major deadline day, so I try the office. The crowded waiting room confirms what I expect from a public service office at the last minute of paper work. Research grant funding works in funny ways, which means I cannot afford to wait. My collard shirt, unfaded jeans, and comfortable shoes remind me that my frustration will be temporary. Middle class privilege rings again and yet, my paycheck is the reason I still search for an answer.

Why do I choose to write about this? And, while I am writing, I’m scared about it. Scared about airing dirty laundry like most folks in this circuit are, because, what established PhD’s with full-time jobs, are thinking about the next generation scrambling to make ends meet, produce quality work and stay relevant enough to get a full-time job? For those that are, what can they do about it with strained free speech, confused and disgruntled students, and the working class, undocumented youth who deserve a chance to be more than underfunded educational institutions and the state say they can or could be.

So, I talk about it because my white-collar poverty and my intellectual training gives me the tools to complicate the difficulty. Because, as I am praying to be eligible for public aid to have more income at my disposal, to live more than from paycheck to paycheck, I am reminded of the threats to layoffs and the continued cutting of funds from public offices in my city/state. What else is a city with a debt like Chicago’s, what else can a state unwilling to tax specific populations like Illinois do? So, despite how frustrated I am by being connected to another client, not being able to find an operator to answer the phone and crowded waiting rooms, I know I am not the only one stressed. Each office which I have dealt with this week is struggling because none of their jobs are secure. Their stress, their inability to answer last minute questions coupled with my own stress clearly articulate both the need for Affordable Care Act but also the financial and institutional hoops created to assure the best access to health care possible.

The ‘limits’ of education-based privilege

Dividing my time between doing my job as a researcher and looking for long-term positions, explain why I didn’t immediately address the needed documentation to complete my application for public aid. In other words, because my PhD entitlement thought I did everything I needed to do but didn’t, I am working at the last minute to solve a problem I could have addressed had I paid more attention.

And yet, I still have time and flexibility to solve the problem. I did solve the problem and, what’s more, had the question answered by the first office—the one that said they didn’t have my paperwork. I knew to call them back because, when I finally reached the final office, they gave me all the information I needed to speak to the rep assigned my case. The organizational mess this was speaks volumes to the effects of cut funding, strained/stressed employees and the greater work ACA supporters need to do in order to make sure those in more dire positions than I get their needs met.

At this point, it is important to clearly define how, despite how little I knew about the system, my entitlement informed a lack of action, what are the forms of privilege I exercised that allowed me to solve my problem by the end of the business day.

  • rearrange my schedule at a day’s notice—a day off did not affect pay
  • call each office and speak to someone to whom I can readily explain what courses of actions I took and ask what else needs to be done.
  • Fax required information to multiple numbers
  • drive to offices when phone calls don’t address my questions
  • work, if needed—revise a paper, read a book, review ethnography notes— while I wait in line to address office needs (I didn’t have to but it was a plan B I had lined up)
  • be patient with the person on the other end because I was not losing a day of work
  • document all courses of action and speak with a discourse, dress in attire that may inform how others will take me more seriously
  • prepare to argue with the office because of the institutional limitations regarding meeting deadlines because of documented calls, detailed articulation of systemic issues in calling each office and awareness of the letter

The dance of affordability

The affordable care act is not yet affordable not only because of the hoops of today, but, more specifically, because state, city and federal offices in charge of making sure we are all insured vary in institutional and professional stability. Their instability parallels and conflicts with the uncertainty that those of us applying for public aid or any insurance may have. That’s a research question I hope someone is tackling in economics or political science, or even law.

I know this is just a hiccup along the way to a prolific career that can still promise white collar 9-5 middle class, insured stability. I know I have greater possibility to choose that anytime I want, comparable to others in the room and on the phone that Friday. Knowing that, however, does not change the weighted responsibility of the errors this system still needs to address. How does the education of life translate—and, right now, it’s all about talking about this question of access and productivity.

We all need to be healthy to effectively contribute to the market; we need access to health care stabilized and, in the midst of this, we need to work to make sure that happens. The ‘we’s’ here vary because of where the power lies, because of what choice, opportunity and support inform about that power. As a PhD with options and opportunities that have arisen since that January, praying for public aid, that’s what has me scratching my head. How do we work in specific career paths completely codependent on the government for its existence, completely codependent on society’s imposed value on our work?

Well, that’s the question, isn’t it?

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Sacrificio

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

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

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

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

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

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

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

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

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

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

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

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“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.

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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.

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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.

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