By Rupa Valdez
Last night, in preparation for a seminar I’ll be giving to all first-year medical students, I watched Aimee Mullins’ TED talk titled “The Opportunity of Adversity.” At the end of the talk Aimee says, “if you had asked me at 15 years old if I would have traded prosthetics for flesh and bone legs, I wouldn’t have hesitated for a second. I aspired to that kind of normalcy. If you asked me today, I’m not so sure.” I saw myself in that statement. Six years ago, I was actively searching for a way to rid myself of the pain and physical limitations that come with my condition. Today, even if a “cure” were offered to me, I’m also not so sure I would take it.
Such a statement might sound incomprehensible. After all, would you voluntarily choose to live in the way that I do? I can walk around my house and office, but anything more requires a wheelchair. Lifting, typing, and using a touch screen are difficult. I haven’t driven a car for the past 6 years. The limitations I experience in my legs, arms, and neck mean that I rely on other people and technology to navigate my day-to-day life. I even require other people to navigate my technology. And then there is the pain, a constant, although inconsistent, companion. These physical limitations coupled with the dietary limitations from my chronic conditions create everyday challenges. Yet, these experiences have shaped the work I do and the way I work in ways I wouldn’t readily give up.
When I began college, I was able-bodied. Although the program I was in had a growing health care concentration, this didn’t pique my interest until years later. At 18, I assumed that after obtaining an engineering degree, I would go on to an MBA, JD, and corporate career. My interests were always eclectic though, and in my Junior year I went to France to study humanities and social science. During the months leading up to the trip and while there I developed severe acid reflux, food allergies, and asthma. For someone who had never experienced living with a health condition, the change prompted me to come home early.
Following this period was an intense introduction to the health care system and what it means to think about your health all the time. If personal experiences shape professional lives, this was the first time my health pulled me in a different direction. I began wondering if there might be a different career path worth following. I interned for Abbott Labs, began working in an engineering lab focused on health care research, and put off making any career decisions for a year while I learned as much as I could about this industry. Eventually, the work of my PhD mentor, which focused on supporting people with chronic conditions at home, resonated most deeply and I spent seven years studying with her.
A decade later, my health experiences again reshaped my professional life. By this time, I was an Assistant Professor whose research focused on understanding how people manage their health at home and creating technologies to support them. Although I must have interacted with many individuals who identified as having a disability, disability as an identity or experience was never an explicit focus. As the wheelchair became a permanent fixture and asking for help became commonplace, I began reflecting on stories told by previous participants in new ways. The research questions expanded, and I started reframing aspects of my work for grant agencies and others.
I find meaning in my work each day because it is personal. The stories shared with me by people with chronic illnesses and disabilities are my stories, perhaps not in their details but often in their essence. It is one thing to listen attentively or even sympathetically to someone’s difficulties. It is another to have a visceral understanding of their words.
I know what it means to have every day shaped by my health and the ways others see me because of it. When participants speak of frustration, I know what it feels like to have to wait eight months for an accommodation. When they speak of prioritizing what can be accomplished in a given day, I know what it feels like to decide if I am going to use my hands to read an article after work or respond to friends’ text messages. When they speak of community, I know what it is like to gain relationships that began with a shared identity of being disabled. If anything, this experience closes at least one of the differences between myself and the people I work with. I can’t study “them” without simultaneously studying myself.
If the meaning of one’s work comes in part from studying something personal, perhaps meaning also arises from working in a way that is personal. Or, to draw on Brené Brown’s idea that vulnerability can make our lives better, perhaps there is strength not only in studying a topic that makes us feel vulnerable but also in working this way.
As an academic, I was professionally “raised” in a hypercritical culture. Knowing that our writing will be subject to intense critique, we often resist sharing early drafts or any part of the formative process. During my doctoral work I was hesitant to share any writing that didn’t pass my own scrutiny. It was often version eight that I submitted for review, even to fellow graduate students.
I felt a mild form of terror the first time Ana and I began working together. When it became clear that I could no longer type, I had two months to finish analyzing my data and writing my dissertation. One of my most vivid memories is being a few minutes into a meeting with my advisor and telling her I could no longer take notes because my hands were too painful. When she suggested a “tandem worker” my first thought was that it sounded terrible. Writing a dissertation brings to life all of your insecurities: is this an accurate representation of the literature? Is this analysis insightful enough? Does anyone except me think this is important? I certainly didn’t want anyone else to see my early drafts or to be privy to my anxieties. Working with another person would bring about a second layer of anxieties that really boiled down to one question: would they think I am an idiot?
Now I have worked with a “tandem worker” for the past 5 and a half years. Over 20 different people have filled this role. The anxieties associated with working with another person haven’t disappeared; they are most pronounced when I begin working with someone new. But, even if I could, I’m not sure I would return to working alone. When I am sitting next to someone, I can’t stay in my own head. Sitting in silence while someone is waiting for you to start talking is incredibly difficult. So often I just start talking. Instead of allowing my inner demons to begin their critique, I open a dialogue with the incredibly bright person to my left. While academia is a solitary career path for most, for me it is a rich social experience. Every piece of writing I produce is shaped by the feedback, criticism, and encouragement I receive not only at the beginning and the end of a project but even midsentence.
I’m mindful of the risk of writing this essay and the ways in which my words may be taken as a story of “inspiration” or “transformation.” Perhaps there is some truth in the latter word. I certainly feel there are meaningful differences between the person I currently am and the person I was six years ago. But, I’m warier of the term “inspiration.” Most lives experience significant changes at one point or another. People adapt and grow in response. My significant change just happens to be more visible and one that people who haven’t lived it might hope never happens to them. At one point I would have felt the same way. On this end of it, I no longer do.
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Rupa Valdez is an Assistant Professor in the Department of Public Health Sciences. She received her PhD in Industrial and Systems Engineering from the University of Wisconsin-Madison.