Unhealthy at the Health Fair: A personal account of chronic illness and disability in the field

Bio: Samantha Streuli is a PhD candidate at University of California, San Diego. Her research centers on a vaccine-promotion health intervention taking place within the Somali refugee community in San Diego. She is particularly interested in Somali refugee health and research epistemologies, power dynamics in health interventions, and the logistical and ethical concerns associated with community-based participatory research. 

I wake up with a pounding headache after eight full hours of sleep. I feel as though I have been up all night. Again. This is a daily occurrence for the past few months as my health has continued to decline. No matter how much rest or exercise I get, no matter how well I eat, no matter how consistent I am with my medications – carrying them everywhere I go and dutifully ingesting them every time my phone alarm beeps at me – I am still in continual pain and still being crushed under the weight of my intense fatigue. My attempts at disciplining my body fall flat in every way as my body becomes more and more unruly (Mintz, 2004). As a disabled person with chronic illness, it seems fitting that I am going to attend a health fair today. However, my attendance at this event is not to receive resources myself, but to provide information and resources to others as well as to speak with Somali community members as part of my field research. I consider staying home. I am exhausted and burnt out after a long week and have a number of events on deck for the upcoming week. As someone who is mostly introverted, I also find constant human interaction to be extremely draining, and I’m just not sure I have the resources to engage with people today. I decide that my temporary discomfort is less important than my research, and much less important than any benefit that I can provide to the community who I’ve been working with for the past two years. At this point I’m already 10 minutes later than when I was asked to arrive. I remember briefly that time is different now that I am sick. Before my illness, I was able to show up a couple minutes early to every event and meeting. Now, I experience crip time (Kafer, 2013, 20). Huge chunks of time simply disappear as I struggle to hold a blow dryer or mindlessly scroll through my phone waiting for my energy to replenish itself enough to move onto the next task. My illness means that I am forever running late.

I arrive at the health fair earlier than Ubax, an employee of a local Somali-run non-profit with whom I will be tabling at this event. I enter the large event hall and stand at the reception table which has been placed near the door. I say “hi” to the women at the reception table, who greet me as I sign in and write my name on a nametag. Eventually the organizer who invited me, Ayan, approaches me to say hello and to take me to my table. I follow her to the front corner of the room. She points out my table, and suggests we move it a bit closer so we can make a circle with the other tables that are already set up around the perimeter of the room. We each take an end and pick up the very heavy table, dragging it about six feet forward and situating it at an angle so that it faces the front door. My back and arms are aching terribly. We pull down two chairs from the large stacks sitting next to the stage that takes up the central portion of the front of the room. This task proves to be more difficult for me than I could have imagined due to the pain I am currently experiencing throughout my body. I think back to when I would spend hours in the gym each week. I looked forward to opportunities to test my bodily strength by lifting heavy objects or carrying all the groceries into the house at one time. Having this physical strength provided me with a more positive view of my own body and its capabilities; but now that I have lost my strength and stamina, my relationship to my body has soured. I see my body as a hindrance, as a problem.

Eventually, Ubax arrives, bringing with her all the supplies to liven up our table. She lays down a blue tablecloth printed with the Somali non-profit’s logo. She then places colorful signs, brochures, and post cards on the table – all full of information and resources for the Somali community. She also lays out stress balls and keychains branded with the Somali nonprofit’s logo. Now we look legit. Ubax marvels at the fact that I am helping to table this even on my own time (“for free!” she emphasizes), and I laugh and agree with her. I am exhausted and am also surprised that I’m here. I tell her I’m not feeling well and can’t stay long, and she understands. Ubax and I sit chatting with one another as a stream of Somali men and women stop by our table throughout the day. Ubax relays information about her organization’s services in Somali, and I only understand a little bit. I have been trying to learn for a while now, but it is taking a long time. There are very few resources available for learning Somali, but I also partially blame my brain fog and constant fatigue. Between my illness, working, doing research, volunteering, and caring for my home there isn’t much of me left for language learning. I think of all the ways my illness has caused me to fall behind my peers, or at least to fall behind where I would like to be at this stage. I wonder how this makes me look to the community I work with, to my fellow researchers, and to my friends and family. These thoughts don’t help my headache or exhaustion.

Ubax and I ask Ayan to take a photo of us at the table before we leave. I realize I didn’t get to talk to or meet as many people as I had hoped at this event, but I hope that those I was able to speak to about my research and the non-profit organization’s resources will receive some benefit from it. I can’t stop thinking about the ways that my pain has negatively impacted my experience today and, worse, has caused me to be less effective at conveying information and providing resources to the community. I have stabbing pains throughout my body, and my head is still throbbing, but I enjoyed the health fair and spending time with Ubax and Ayan. I pack up my things and drag my rolling bag (which I started using when I could no longer carry a backpack due to pain) out to my car.

As I drive home, I can’t stop thinking that I hope my pain and fatigue won’t negatively impact my future interactions in the field, but I know that they probably will. As someone with an invisible illness, I am concerned that others may view my complaints or my inefficiencies as illegitimate. I wonder if I belong in anthropology at all when engaging in ethnographic fieldwork and community engagement often cause me pain and discomfort. I attempt to reassure myself that I am not the only one who experiences pain and discomfort in the field, but echoing in my head, I hear the words of a colleague telling me that people with disabilities don’t belong in academia at all. I worry that my illness makes me less effective, that my brain fog impacts my ability to take field notes or have meaningful conversations, that I might prioritize my own health concerns over the concerns of my interlocutors thereby failing in my ethical commitments, that the communities I work with deserve to work with a “healthy” researcher who can provide them with more resources and be more engaged than I can. I wonder what an engaged anthropology looks like for sick and disabled anthropologists, and how we can work ethically and responsibly while experiencing illness in the field.

Because I don’t know how to manage these concerns or answer these questions, I sit down and write this account. I hope that writing about my own experiences can help me to examine my relationship to my illness and my body and help me understand how to navigate this relationship in the field. I also hope that honesty and transparency about these issues will allow me to show solidarity with others facing the same challenges and will help us move toward imagining a future where illness and disability don’t make us (or anyone else) question whether or not we belong in the field. I let out a deep sigh and remind myself that although my illness often shapes my experience of fieldwork in unexpected ways, my ways of knowing and experiencing still have value for the field of anthropology.

~

I truly believe that my own experiences of disability and chronic illness shape my engagement with research in ways that strengthen my scholarship, even when I am not directly studying disability and chronic illness. Just as other chronically ill and disabled anthropologists whose work I admire belong in this field, I belong in this field, despite what others may say to the contrary. Health, whatever that may mean, is not a prerequisite for scholarly engagement and is not the only state of being that enables important research. This fact is reflected in my continual ability to engage deeply with my research thanks to the incredible support that I have received from my highly involved graduate committee as well as from my interlocutors and research collaborators, who often have deep and personal understandings of the limitations and possibilities that come with chronic illnesses.

While I am personally encouraged by these sources of solidarity, I am concerned that support for and solidarity with chronically ill and disabled researchers is not the norm in academic settings. It is absolutely necessary that universities and individual departments not only provide necessary accommodations for chronically ill and disabled students, but that we reconsider the ways in which we engage with disability more broadly in professional settings. For instance, in order to receive accommodations in the first place, we are generally required to provide documentation of our conditions. For those of us with invisible or undiagnosable chronic conditions, inadequate access to healthcare due to various constraints, or those of us who do not wish to publicly reveal our diagnoses, documentation may not be possible. As a discipline in which we value subjective experience, anthropology in particular must take it upon itself to value the lived experiences of its researchers and to value those experiences as much as it values bureaucratic and invasive systems of medical documentation.

It is also important that academic departments take up the task of normalizing disability and chronic illness in fieldwork by hosting workshops on managing disability and chronic conditions in the field, including disability studies scholarship and work by disabled scholars in core courses, ensuring disabled and chronically ill students are paid a living wage and provided with excellent access to healthcare, and hiring chronically ill and disabled scholars. Only when we truly integrate these practices into our work will we be able to reach a stage where disabled and chronically ill scholars can not only feel safe in our fields but can fully thrive.

References

Kafer, Alison. 2013. Feminist, Queer, Crip. Bloomington and Indianapolis: Indiana University Press.

Mintz, Suzannah B. 2004. Unruly Bodies: Life Writing by Women with Disabilities. Chapel Hill: The University of North Carolina Press.

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