Uncharted, edited by kylar Bayer and Gabi Serrato Marks (introduction)

INTRODUCTION Charting the Course SKYLAR BAYER AND GABI SERRATO MARKS

“Charting the course”: “Charting” is a nautical term, implying that you are drawing up a route across a nautical chart for your journey. You’re creating your own course, not necessarily following someone else’s plan. In fact, it may be a unique path forward, especially if you are moving into unfamiliar waters.

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o one thinks a PhD will be easy. For many, it involves traveling into unknown metaphorical waters with unexpected professional obstacles. Early in our PhD programs, both of us experienced medical hurdles that we never anticipated. While our medical conditions have challenged us in different ways, we have both noticed that scientific research is rarely designed to accommodate scientists with medical conditions or disabilities, even at the highest levels of success.1 That could be understandable if we were part of a tiny group, but millions of adults in the United States have a disability—and those figures are from before the COVID-19 pandemic, a mass disabling event.2 Disabled researchers remain highly underrepresented in science, technology, engineering, and mathematics (STEM).3 Scientists with disabilities have so much to offer: we have diverse, creative,

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and unique ideas that are important for pushing research forward.4 Nonetheless, we are only able to use our creative skills when we are healthy enough to do research. Both of us have found that we have to be particularly vigilant about making sure that our access to health care and health insurance is consistent and supportive.

We have become acutely aware of both the financial and time costs of visiting specialists regularly and the emotional weight of making decisions about our health. We, along with other scientists with disabilities and medical conditions, have succeeded in our careers, but only because we have had access to health care, emotional support, and institutional backing.

Historically, scientists have had to “tough it out” for the sake of research. If we are not tough enough to endure long days in the lab, weeks in the field, or some other metric of strength, we’re simply not worthy of being scientists. At least, that’s what academic culture tells us. And while those skills and efforts may have been necessary centuries ago, there are plenty of capable scientists who don’t fit that mold. Given the prevalence of disabilities and medical conditions among the public—some estimates are as high as one in three adults in U.S. rural areas—it seems strange that our experiences are not shared with the megaphone they deserve.5 Disabled scientists exist, but our stories haven’t become part of academic culture.

The main exception is Stephen Hawking, who is usually the first person to come up if anyone searches for “disabled scientist.” But the narrative about his life is almost always about how he “overcame” his “challenges” and was a super-genius. In reality, he succeeded because of the accommodations he received, and nonexceptional scientists should get fair access, too. Moreover, Hawking represents only one kind of disability and one perspective, but there are many other kinds of disability, not all readily visible. If most academics don’t know that scientists like us exist, the dominant culture won’t

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change. We want to use our stories to highlight our expertise on this subject and move the conversation forward.

“Uncharted” is a word that came to mind when we were thinking about scientific discovery and journeys of health. A chart is used in navigation, science, and medicine, so to be uncharted is to be off the map, excluded from the data, or not accounted for in health care. Reflecting on our journeys with medical conditions and disabilities in science, we are really navigating our own uncharted journeys in our fields and with our health—creating our own path over a wide expanse of ocean. Often, unbeknownst to us, there are many more of us charting a new path over the same wide expanse. While we all take different paths, we learn similar lessons and tricks to keep our ship afloat and sailing forward. Could we build a stronger community if we came together and shared our journeys with one another?

You’ll notice that many of these stories take place out in the field, both on land and at sea, but scientific journeys are not limited to extreme natural environments and outdoor experiences.

Researchers don’t leave their disability at home when they go to the lab and participate in everyday life, and every type of work can venture into uncharted terrain.

The authorities on life as a scientist with a disability are those who live that reality every day, so we need to be the ones to share our stories and experiences. In this book, we share stories from current and former scientists across disciplines, career stages, medical conditions, and disabilities and across other demographics.

While recruiting potential writers, we found very few submissions from people outside the United States or in later career stages. This result reflects a variety of factors: our network, disability legislation in the United States, and changing attitudes around disclosure about health conditions. Haben Girma, the

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first Deafblind person to graduate from Harvard Law School (and one of Gabi’s role models), put it best: “We know that people with disabilities succeed not by magic but from the opportunities afforded by America.”6 We acknowledge our privilege as U.S.-born scientists and hope that this book will open doors for future scientists around the world.

Most of the authors in this anthology are from the United States, but three are from the United Kingdom, one is from South Africa, and one is from New Zealand. Many of our authors are from marginalized communities: they are Black, Native American, Indigenous, Middle Eastern, Asian American, Latinx, multiracial, immigrants, women, first-generation college students, queer, trans, nonbinary, unemployed, veterans, and from many other overlapping groups. After all, disability intersects with all other facets of identity. These additional identities can further complicate the experience of a disabled scientist, as will be very apparent in chapters written by authors with visible marginalized identities. Living with at least one disability or health condition can lead to further marginalization, especially when seeking out diagnoses for separate conditions. We realize that the diversity of our authors is not necessarily apparent throughout our anthology.

This was intentional because we did not want authors to feel that they had to share every aspect of their identity, especially if it wasn’t relevant to their specific story. Furthermore, there are so few of us that many disabled scientists are easily identifiable by a list of just a few of their identities, even without a name or institution. Several authors also expressed concerns about safety and stigma, including some who chose to remain anonymous. We’re extremely proud of the group we’ve assembled. At the same time, we want to be very clear that this short collection of stories does not represent all disabled scientists. There’s a reason that there’s no single definition of “disabled”—there’s no neat phrase that can encompass all our experiences.

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The key questions we ask in this book are: What is it like to be a scientist with a disability or a medical condition? What problems do the writers face every day? Some days? What are the benefits of having a disability? What are the highlights of their life as a scientist, as a human being? How are they supported, and how do they support others? How are their work and their health woven together in their lives? For those authors who have left science, does their story give us clues as to why they left? One of the goals of this book is to show a multitude of human emotions and experiences: sorrow, anger, fear, joy, love, humor, desire, resilience, and curiosity, to name but a few. As a result, many of these stories show the authors as whole human beings and do not focus only on their science or specific research projects. But that doesn’t mean they’re not scientists—we are all worth more than our work.

In organizing the chapters, one approach would have been to group them by types of medical conditions or disabilities, in which case we would have ended up with sections on mental illness, sensory disabilities, and similar categories. However, when we came up with the concept of Uncharted, we wanted to make it clear that our specific conditions or diagnoses are not what define our stories. All of these stories highlight experiences along a journey we were not necessarily expecting, although we all keep moving forward—much as if we were on a challenging nautical voyage. So we divided our anthology into stages of a theoretical nautical journey: “Getting Underway,” “Between the Devil and the Deep Blue Sea,” “Rallying the Crew,” “In the Heart of the Maelstrom,” “Reflections in the Water,” and “I Am the Captain of My Ship.” Each section begins with a description explaining the general themes that tie the stories together.

The diversity within this collection of stories makes it special and accessible to many, including parents, students, teachers, higher education professionals, and anyone with a stake in increasing

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diversity in science. In short, we hoped to create the type of book that we wish we had, hopefully the first of many more.

Most people will need to deal with difficult medical conditions, choices, and stress. Almost everyone is connected to someone with a disability. Therefore, this book is not just for other scientists but for anyone and everyone.

Please enjoy the stories ahead—the authors shared them with generosity, passion, and vulnerability.

NOTES 1. Jessie Shanahan, “Disability Is Not a Disqualification,” Science 351, no. 6271 ( January 2016): 418, doi:10.1126/science.351.6271.418.

2. National Center on Birth Defects and Developmental Disabilities, “Disability Impacts All of Us,” Centers for Disease Control and Prevention,September 2020,https://www.cdc.gov/ncbddd/disabilityand health/infographic-disability-impacts-all.html.

3. Colleen Flaherty, “Federal Report Shines Light on Historically Underrepresented Groups in Science,” Inside Higher Ed, May 2021, https:// www.insidehighered.com/news/2021/05/04/federal-report-shines -light-historically-underrepresented-groups-science.

4. Erica Avery, “Disabled Researchers Are Vital to the Strength of Science,” Scientific American Blog Network, January 2019, https://blogs .scientificamerican.com/voices/disabled-researchers-are-vital-to-the -strength-of-science1/; Eryn Brown, “Disability Awareness: The Fight for Accessibility,” Nature 532, no. 7597 (April 2016): 137–39, doi:10.1038 /nj7597-137a.

5. National Center on Birth Defects and Developmental Disabilities, “Prevalence of Disability and Disability Types,” Centers for Disease Control and Prevention, October 2021, https://www.cdc.gov/ncbddd /disabilityandhealth/features/disability-prevalence-rural-urban.html.

6. Joseph Shapiro, “She Owes Her Activism to a Brave Mom, the ADA, and Chocolate Cake,” NPR, July 2015, https://www.npr.org/sections /goatsandsoda/2015/07/31/428075935/she-owes-her-activism-to-a-brave -mom-the-ada-and-chocolate-cake.

People with disabilities are underrepresented in STEM fields, and all too often, they face isolation and ableism in academia. Uncharted is a collection of powerful first-person stories by current and former scientists with disabilities or chronic conditions. These deeply personal accounts describe not only challenges but also the joys, sorrows, humor, and wonder of science and scientists.

“Uncharted is a crucial and timely collection exploring the lived experiences of scientists with a broad array of disabilities and chronic conditions. Skylar Bayer and Gabi Serrato Marks, alongside many brilliant contributors, share courageous and moving stories that will challenge and shift the way readers think about disability.

The book offers companionship for scientists working under what can be isolating conditions as well as recommendations for improving access in STEM fields.

Uncharted is a must-read call to action for scientists and their institutions to ensure a more inclusive and just future for all.”

—Faith Kearns, author of Getting to the Heart of Science Communication: A Guide to Effective Engagement “A hopeful, heart-wrenching kaleidoscope of stories. These personal essays vividly share experiences that have been ignored or silenced for too long.

The contributors have given us a gift and an opportunity to think broadly and act boldly to support everyone, in all of our unique and changing needs. This expansive collection of first-person stories is a must-read for anyone who cares about scientific research and all the humans who do it.”

—L iz Neeley, founder and CEO, Liminal “Uncharted is full of compelling narratives that illustrate the ingenuity and resilience of disabled scientists as well as the challenges they face, demonstrating the multifacetedness of their lived experiences.”

—L iset te E. Torres, senior researcher, TERC S K Y L A R B AY E R is a marine ecologist and science communicator. Currently a marine

habitat resource specialist in the NOAA Fisheries Alaska Regional Office, she received her PhD from the University of Maine’s School of Marine Sciences for research on the sex lives of scallops and is a producer for the Story Collider.

G A B I S E R R A T O M A R K S is a geochemist turned writer. She received her PhD in the MIT-WHOI Joint Program in Oceanography and is now a partner at the scientistfocused PR firm Stellate Communications. Her work has been published in Scientific American and Audubon and on the PBS Eons YouTube Channel.

cover design by henry sene yee COLUMBIA UNIVERSIT Y PRESS | NEW YORK cup.columbia.edu Printed in the U.S.A.