Immunodeficiency and Oral History
By: Sarah Dziedzic
Tags: Covid 19, Oral History, Autoimmune Disease, Telemedicine, Disability Justice

I saw a tweet in the early days of widespread social distancing that made me realize how different my day-to-day was from other oral historians:

“Oral historians. Don’t conduct that interview remotely. It will be much worse relative to what you could’ve done in person. Instead just call folks to see how they’re doing. Have a chat. Stop thinking about product.”

By this time, I had already had ten doctor visits in 2020 to figure out the underlying cause of a chronic respiratory infection I’d had since the end of 2019. Already three months in to my own respiratory drama that was beginning to run parallel to the COVID-19 virus that was spreading so quickly across the globe, and the city where I live, New York. Already three months in to daily wipe-downs of doorknobs and light switches, not touching my face, and frequent extended hand washing (to the tune of the alphabet song, if you’re wondering, before people got fancy with diagrams and custom song lyrics). Already three months in to distancing myself from friends — not going out, not showing up. Trying to get well.

There was nothing wrong with the point of this tweet, aside from callously referring to the interview as a “product.” Sure, let’s not focus on “product,” and let’s instead check in with our narrators and make sure they’re ok. But to be honest, I didn’t have any narrators to check in with because I had been sick for three months. I couldn’t trust myself to be healthy, and I couldn’t trust myself not to be contagious. I didn’t know what was wrong with me. I thought about the 94-year-old woman I interviewed in her apartment at the end of 2019 and was scared that I could have exposed her to whatever seemed to be replicating inside me. Was she ok? I wasn’t ok.

On the day I read this tweet, I was one week into waiting for blood test results that would indicate whether I had an underlying immune system deficiency. Such a diagnosis is not something I would ever take lightly, but it hit especially heavy in the midst of a global pandemic that could so readily lead to death for those who were immunodeficient. Death was a new word added to my nightly sleepless rotation, joining respiratory infection, virus, contagious, immunity, and allergens. Soon after was epicenter, and then epicenter of the epicenter. I live in Queens, 4 miles from Elmhurst Hospital, where they were renting refrigerated trucks to store dead bodies. Those were my neighbors.

The thing about autoimmune disorders, including allergies, is that your body doesn’t respond like it should. It attacks things that are fundamentally benign, like pollen, an external trigger, or things that are essential and internal, like your thyroid, your joints, or your kidneys. Our bodies fight even though there’s no danger. Our bodies are wily. Our bodies are tired. These disorders can be hard to diagnose. Acute symptoms may be levels removed from the root cause, and can be unique to each body. For me, old injuries start to hurt again as a sign that something, somewhere, is deeply wrong.

But often, medical doctors are forced to operate within a framework guided by acute symptoms, and diagnose by what’s most likely; a best guess given what they’ve encountered seeing many human bodies in the typical forms of distress. And even if a doctor preferred to practice differently, they have little flexibility while operating within a health system driven by profit, where patients are slotted in to 15-minute appointments. Despite all that I’ve learned in 38 years of close observation, it’s rare to find a doctor that will take seriously my insight that something isn’t right about my own body. As a result, over the years and through various infections, doctors have failed to treat me; the first two months of my respiratory infection, no doctor ran any tests, or sought an underlying cause for my chronic infection. “Stop worrying so much.” “Drink more water.” It’s probably this, it’s probably that.

The fact is that many, many people have serious autoimmune disorders, or are immunodeficient, and live daily with the risk factors that make them especially vulnerable to outside infection, in addition to the internal ruckus their bodies cause. And these disorders are not cured by worrying less or drinking more water. Nor are they probable. For me, it was frightening that my own body had flared up at the worst possible time, when some people were unsympathetically breathing sighs of relief that they weren’t considered “high risk” for mortality by COVID-19, and others found themselves in the bullseye and having to take preventative and defensive measures above and beyond the usual protocols. As my grandfather used to say, “When the flu’s got your number, boy, it’s got your number.”

It just so happened I didn’t know where to place myself at this moment, when suddenly everyone was talking about the topics that had been endlessly cycling through my mind the last three months: immunity, illness, and health. The six different doctors I had seen in this three-month period differed in their opinions about what was wrong with me. And if you are wondering why I don’t have “a doctor”: as a freelancer whose income fluctuates from year to year, the care I’m eligible to receive, the cost of that care, and who I’m permitted to solicit for care, varies from year to year. A small fish flung about by the churns of the market, I’ve needed to switch insurance carriers six times in the last five years, often with gaps in coverage. And plus, why would I ever go back to a doctor that didn’t listen to me in the first place? Oral historians notice bad listeners.

Interviewing remotely. The tweet framed it as “much worse” than any in-person interview. Earlier that day, I had seen a doctor over a video call who was genuinely helpful, even though the lab had lost my test results and she couldn’t tell me the answers to my biggest question: was my immune system compromised or not? She listened to my other questions and gave me helpful answers. I saw her look up answers she didn’t know, and commit to call me back with more details, which she did that evening. She simply treated me like a person, a feature that in my experience cannot be faked. But was my appointment actually “much worse” than any meeting we could have had in person? Our interaction was good because she listened to me explain my unique, embodied experience, and listened respectfully — and in turn, I respected and trusted her. Isn’t this the fundamental core of oral history? How had being in the same room with someone become the only predictor of quality?

Rather than using this historical moment to double down on adherence to in-person interviewing, why not instead look to interviewers, such as Alice Wong of the Disability Visibility Project, for leadership in how to conduct good, remote, safe, and accessible oral history interviews? No doubt, there are many positive things to be said about meeting “face to face,” in all its metaphorical and literal interpretations. And thankfully, technology has provided us with the option of meeting virtually face to face, while it has yet to offer a substitution for engaged and responsive listening. At this moment, where physical distance from others is necessary, shouldn’t oral historians be leaning into our skills as listeners — no matter the recording format — and reevaluating the longstanding insistence on doing this work in person? To be fair, back in mid-March, few of us realized the significant and permanent ways COVID-19 would change our lives, not to mention our interviewing methods. In fact, its impacts are still very much evolving, and evolving fast. But we can no longer afford not to prioritize learning from the field of disability justice about how to make our practice more accessible for people with compromised immune systems. It should not have taken a global pandemic for oral historians to evaluate the safety and accessibility of our in-person interviewing practice. But here we are.

The COVID-19 pandemic has forced a widespread rethinking of what work can be done at a distance. As advocates within the disability justice movement have called out, quite a lot can be done remotely, especially when there is willingness on the part of the employer to facilitate it. For many of us, using video calls as a stand-in for in-person meetings and socializing is new, while for others, it’s necessary, commonplace, and a primary way in which communities have become strong and resilient. Speaking for myself, over the last few weeks I have — remotely — supported a friend through a breakup, checked up on a friend who became ill after her workplace refused to go remote, connected with strangers in my neighborhood to form a mutual aid network, and attended a group therapy session for residents of Queens hosted by a friend’s sister. For me, up until recent months, “showing up” to support the people in my life would have meant an in-person visit, a kind of “photos or it didn’t happen” logic. But now that that’s not possible, we’ve got no choice but to show up remotely, and to make our remote presence count in ways we’ve never had to make it count before.