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Uncharted: How Scientists Navigate Their Own Health, Research, and Experiences of Bias
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 who have faced changes in their careers, including both successes and challenges, because of their health. It gives voice to common experiences that are frequently overlooked or left unspoken. These deeply personal accounts describe not only health challenges but also the joys, sorrows, humor, and wonder of science and scientists.
With a breadth of perspectives on being disabled or chronically ill, these stories highlight the intersectionality of minoritized identities with the disability community. Uncharted features essays by contributors who are d/Deaf, blind, neurodivergent, wheelchair users, have experienced traumatic brain injuries, have blood sugar disorders, have rare medical diagnoses, or have received psychiatric diagnoses, among many others. In many cases, the scientific field is not fully accessible to them, and they frankly describe struggling as well as thriving alongside their conditions.
This book serves as representation for scientists who have never felt comfortable disclosing their disability or who have never felt fully understood. The stories shared in this book seek to normalize medical conditions and disabilities in scientific culture, offering recommendations for how and why to improve access. Uncharted is vital and compelling reading for current and aspiring scientists who want to make their fields more inclusive and supportive for everyone.
With a breadth of perspectives on being disabled or chronically ill, these stories highlight the intersectionality of minoritized identities with the disability community. Uncharted features essays by contributors who are d/Deaf, blind, neurodivergent, wheelchair users, have experienced traumatic brain injuries, have blood sugar disorders, have rare medical diagnoses, or have received psychiatric diagnoses, among many others. In many cases, the scientific field is not fully accessible to them, and they frankly describe struggling as well as thriving alongside their conditions.
This book serves as representation for scientists who have never felt comfortable disclosing their disability or who have never felt fully understood. The stories shared in this book seek to normalize medical conditions and disabilities in scientific culture, offering recommendations for how and why to improve access. Uncharted is vital and compelling reading for current and aspiring scientists who want to make their fields more inclusive and supportive for everyone.
- GenresScienceNonfiction
328 pages, Hardcover
First published August 8, 2023
6 people are currently reading
156 people want to read
About the author
Skylar Bayer
1 book6 followersSkylar Bayer is a marine ecologist and science communicator. Currently a marine habitat resource specialist in Alaska, 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.
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Displaying 1 - 12 of 12 reviews
February 16, 2024
Being a book reviewer who apparently can't read, I initially processed the byline of Uncharted as being about researchers navigating their health and research bias rather than sharing their experiences of such. In hindsight it would have been weird if a book about disabled researchers was all them talking about discriminating against other people. In reality, this book does what it actually says in the title and collects the voices of disabled and chronically ill researchers discussing their experience with a wide variety of things in their fields and elsewhere.
This book has one of the most diverse sets of people across the essays included that I have encountered in an anthology. I admittedly expected a book with any sort of academia to be skewed in a certain direction. Instead this book offers a wide range of disabilities, ages, genders, economic backgrounds, countries of origin, races, and science fields. No book is ever perfect at covering every demographic, of course. Since this is an English text there's going to be some skewing there for instance. Yet, I can't recall the last time that I ran into an anthology with people from so many different life experiences.
I also found the essays in this book to be pretty good across the board. Some moved me more than others, but I think that all of them had something to offer the reader. I have to reiterate how nice it was to see a wide range of disabilities and chronic illnesses mentioned because it really covered a wide range of barriers that both disabled and non-disabled researchers would benefit from overcoming. Some of the participants saw their disability as part of them and something they did not wish to change. Other participants, such as some with chronic illness, wanted their problems to get better or go away. There was a wide range of discussion of everything in between as well. Multiple contributors discuss the social model of disability including its benefits and flaws. One of my favorite essays included a researcher who discussed how the social model of disability can also be used to make sure people, such as those who speak other languages or who aren't fluent in English, can be better included in research.
There were of course many stories of strife and struggle in this book. These ranged from struggles with literal physical barriers such as the lack of wheelchair accessibility in so many fields and buildings to the responses of advisors and colleagues ranging from dismissive to reprehensible. There are also many stories of people coming together to include their colleagues with disabilities. It is clear that that is not enough. Without systemic change, many people with disabilities are still relying on the kindness of other scientists and grad students who are also overwhelmed. Disabled people should not have to rely on such an unstable structure in order to be able to participate. Luckily there are some institutions who are trying to do better who are detailed by some of the contributors.
The design of the print book also had accessibility in mind to a certain extent. I liked how each grouping of essays got its own small introduction. They were content warnings at the start of each essay. The book was written in accessible language for the most part. There are illustrations either of the contributors or sometimes other images at the beginning of each entry, but there are not any image descriptions. Since I did not use an audio or ebook, maybe those are present there. Since there are blind contributors it seems like this was an oversight not to include descriptions if it isn't an audiobook or ebook.
For those of you reading who may be on the collective/total liberation spectrum wondering if you will be forced to endure people who harm nonhuman animals discussing the difficulties with access while completely ignoring their literal disabling/exploiting/killing of their victims in laboratory cages, fear not. There are so many different research fields portrayed here and that those who mentioned doing work with other animals were people doing field work such as ecology or climate research. If there are any who are doing captive animal research, they didn't mention it, but I admittedly did not Google every person.
One of the most important messages this book is that accessibility helps everyone. Accessibility for disabled people should be reason enough to include it in every structure and system. However, even people without disabilities or disabled folks without each other's disabilities will benefit from accessibility for all. Not only do accessible systems often make things easier for abled people as well, this book makes clear just how many brilliant scientists we are deprived of overall when they can't even get in the door or sustain the grueling grad program that is a struggle for even those without chronic illness. Disabled people who don't use wheelchairs and abled people both benefit from wheelchair accessibility. Healthy disabled people and abled people both benefit from structures that allow more flexibility for those with chronic illness. Even the most self-centered abled person on Earth must reckon with the reality that even they will benefit. This book reminds us how important it is to see accessibility as solidarity and as a collective liberation effort rather than an optional form of charity.
This was also posted to my blog.
This book has one of the most diverse sets of people across the essays included that I have encountered in an anthology. I admittedly expected a book with any sort of academia to be skewed in a certain direction. Instead this book offers a wide range of disabilities, ages, genders, economic backgrounds, countries of origin, races, and science fields. No book is ever perfect at covering every demographic, of course. Since this is an English text there's going to be some skewing there for instance. Yet, I can't recall the last time that I ran into an anthology with people from so many different life experiences.
I also found the essays in this book to be pretty good across the board. Some moved me more than others, but I think that all of them had something to offer the reader. I have to reiterate how nice it was to see a wide range of disabilities and chronic illnesses mentioned because it really covered a wide range of barriers that both disabled and non-disabled researchers would benefit from overcoming. Some of the participants saw their disability as part of them and something they did not wish to change. Other participants, such as some with chronic illness, wanted their problems to get better or go away. There was a wide range of discussion of everything in between as well. Multiple contributors discuss the social model of disability including its benefits and flaws. One of my favorite essays included a researcher who discussed how the social model of disability can also be used to make sure people, such as those who speak other languages or who aren't fluent in English, can be better included in research.
There were of course many stories of strife and struggle in this book. These ranged from struggles with literal physical barriers such as the lack of wheelchair accessibility in so many fields and buildings to the responses of advisors and colleagues ranging from dismissive to reprehensible. There are also many stories of people coming together to include their colleagues with disabilities. It is clear that that is not enough. Without systemic change, many people with disabilities are still relying on the kindness of other scientists and grad students who are also overwhelmed. Disabled people should not have to rely on such an unstable structure in order to be able to participate. Luckily there are some institutions who are trying to do better who are detailed by some of the contributors.
The design of the print book also had accessibility in mind to a certain extent. I liked how each grouping of essays got its own small introduction. They were content warnings at the start of each essay. The book was written in accessible language for the most part. There are illustrations either of the contributors or sometimes other images at the beginning of each entry, but there are not any image descriptions. Since I did not use an audio or ebook, maybe those are present there. Since there are blind contributors it seems like this was an oversight not to include descriptions if it isn't an audiobook or ebook.
For those of you reading who may be on the collective/total liberation spectrum wondering if you will be forced to endure people who harm nonhuman animals discussing the difficulties with access while completely ignoring their literal disabling/exploiting/killing of their victims in laboratory cages, fear not. There are so many different research fields portrayed here and that those who mentioned doing work with other animals were people doing field work such as ecology or climate research. If there are any who are doing captive animal research, they didn't mention it, but I admittedly did not Google every person.
One of the most important messages this book is that accessibility helps everyone. Accessibility for disabled people should be reason enough to include it in every structure and system. However, even people without disabilities or disabled folks without each other's disabilities will benefit from accessibility for all. Not only do accessible systems often make things easier for abled people as well, this book makes clear just how many brilliant scientists we are deprived of overall when they can't even get in the door or sustain the grueling grad program that is a struggle for even those without chronic illness. Disabled people who don't use wheelchairs and abled people both benefit from wheelchair accessibility. Healthy disabled people and abled people both benefit from structures that allow more flexibility for those with chronic illness. Even the most self-centered abled person on Earth must reckon with the reality that even they will benefit. This book reminds us how important it is to see accessibility as solidarity and as a collective liberation effort rather than an optional form of charity.
This was also posted to my blog.
January 14, 2024
5 stars (if I could give it more I would!)
This book had me crying in nearly every chapter as I recognized my own experiences with being disabled in STEM reflected in the stories. I realized I have a lot of internalized ableism (still, I thought I had worked that out but no). I also empathized with the scientists who had difficulties knowing when and who to disclose their disability to. When you’ve gone the majority of your life being told by doctors that you’re making up your symptoms, it can be difficult to come to terms with the fact that you actually are disabled and might need accommodations or to tell someone about it. I have no idea how to do that still but knowing that I’m not alone in navigating STEM as a disabled person gives me hope.
Thank you for this wonderful and much needed book.
This book had me crying in nearly every chapter as I recognized my own experiences with being disabled in STEM reflected in the stories. I realized I have a lot of internalized ableism (still, I thought I had worked that out but no). I also empathized with the scientists who had difficulties knowing when and who to disclose their disability to. When you’ve gone the majority of your life being told by doctors that you’re making up your symptoms, it can be difficult to come to terms with the fact that you actually are disabled and might need accommodations or to tell someone about it. I have no idea how to do that still but knowing that I’m not alone in navigating STEM as a disabled person gives me hope.
Thank you for this wonderful and much needed book.
August 2, 2023
Thank you to NetGalley for giving me an E-Arc of this book before it came out! Uncharted: How Scientists Navigate Their Own Health, Research, and Experiences of Bias is an amazingly put together book that describes the experience of disabled scientists within their field of study. All of the scientists talked about different aspects of their lives and their disabilities which makes for a broad read. The writing was exceptional but did vary from scientist to scientist with some being a little slower than others although none were bad. I liked how they had content warnings at the beginning of the different scientists sections.
I think that this book would be well suited for undergraduates with disabilities who are concerned about their future. Although, this book could easily be for anyone and I think those who teach or work in science would also benefit by reading this even if they are not disabled.
I think that this book would be well suited for undergraduates with disabilities who are concerned about their future. Although, this book could easily be for anyone and I think those who teach or work in science would also benefit by reading this even if they are not disabled.
August 16, 2024
This book should be read by anyone who wants to understand the kinds of challenges faced by scientists who struggle with disabilities and serious medical conditions. "Uncharted" includes so many stories that were remarkably moving, well written, and will leave a lasting impact on me as a friend and ally of scientists with disabilities.
I suspect one would be hard pressed to find a more diverse group of contributors in a volume of collected stories anywhere. Almost everyone should be able to find multiple stories in this book that will resonate with them, and perhaps stories that one can personally relate to as well. Because of this diversity, you may not relate to every story and there may very well be individual stories that you don't like, but there will also be other stories that have a powerful effect on the way you view diversity, equity, and inclusion in science, particularly when it relates to disability.
The stories in "Uncharted" range from crushing accounts of hopelessness and defeat in the face of never-ending barriers to success, to stories celebrating the camaraderie and community gained from working in a supportive and accommodating environment. And everything in between. There are stories of scientists who were born with well-studied conditions, scientists caught off guard by devastating mid-career health challenges, and those who are still struggling to find a diagnosis for their disability, only indicating how still incomplete our medical knowledge remains. There are stories of established, veteran scientists, stories of struggling graduate students, and stories of those who have defected from academia due to the lack of support they received. There are stories written by veteran, professional storytellers and others written by scientists who have never before published a first-person account. There are stories of unbridled scientific curiosity, stories of love, stories of hope, stories of heartbreak, stories of friends and family, stories of isolation and loneliness, stories of resignation and futility, and stories of strength, resilience, and resolve. There are stories that just plainly remind us to learn to appreciate the beauty in life and the world despite our challenges and to remember that, someday almost everyone will be classified as "disabled" if you are fortunate to live long enough. There are stories that teach us the tremendous importance of accepting ourselves and others for who we are.
Science does not occur in a sociological vacuum: there are real people behind the discoveries we rely upon to solve the challenges we face and better understand our world. Like all people, scientists can experience disabilities, serious medical conditions, trauma, mental health challenges, etc. This book served as a reminder that when we fail to support these individuals through their challenges with compassion, empathy, and reasonable accommodations, we run the risk of losing out on the full benefits of creativity, hard work, passion, and ingenuity that this demographic provides society. Conversely, when we succeed in supporting scientists and providing reasonable accommodations, science expands its horizons, and we expand our sense of humanity and humility.
If you care about promoting a greater diversity of representation in the sciences, then you should read this book. If you care about the quality of science that we produce and about supporting the people who dedicate their lives to this science -- to understanding our universe and answering the big questions that plague humanity, then you should read this book.
Finally, a caveat: I know one of the editors of this book personally. Because of that personal knowledge, I am aware of how much tremendous work and years and years of back and forth with the contributors, multiple revisions, reminders, encouragement, etc. went into the production of this volume. Because of the incredible efforts of the two editors, this book did a remarkable job of striking a balance between maintaining the diverse and often unique voices of its contributors and shining a very informative light upon the current state of disabilities in science.
I suspect one would be hard pressed to find a more diverse group of contributors in a volume of collected stories anywhere. Almost everyone should be able to find multiple stories in this book that will resonate with them, and perhaps stories that one can personally relate to as well. Because of this diversity, you may not relate to every story and there may very well be individual stories that you don't like, but there will also be other stories that have a powerful effect on the way you view diversity, equity, and inclusion in science, particularly when it relates to disability.
The stories in "Uncharted" range from crushing accounts of hopelessness and defeat in the face of never-ending barriers to success, to stories celebrating the camaraderie and community gained from working in a supportive and accommodating environment. And everything in between. There are stories of scientists who were born with well-studied conditions, scientists caught off guard by devastating mid-career health challenges, and those who are still struggling to find a diagnosis for their disability, only indicating how still incomplete our medical knowledge remains. There are stories of established, veteran scientists, stories of struggling graduate students, and stories of those who have defected from academia due to the lack of support they received. There are stories written by veteran, professional storytellers and others written by scientists who have never before published a first-person account. There are stories of unbridled scientific curiosity, stories of love, stories of hope, stories of heartbreak, stories of friends and family, stories of isolation and loneliness, stories of resignation and futility, and stories of strength, resilience, and resolve. There are stories that just plainly remind us to learn to appreciate the beauty in life and the world despite our challenges and to remember that, someday almost everyone will be classified as "disabled" if you are fortunate to live long enough. There are stories that teach us the tremendous importance of accepting ourselves and others for who we are.
Science does not occur in a sociological vacuum: there are real people behind the discoveries we rely upon to solve the challenges we face and better understand our world. Like all people, scientists can experience disabilities, serious medical conditions, trauma, mental health challenges, etc. This book served as a reminder that when we fail to support these individuals through their challenges with compassion, empathy, and reasonable accommodations, we run the risk of losing out on the full benefits of creativity, hard work, passion, and ingenuity that this demographic provides society. Conversely, when we succeed in supporting scientists and providing reasonable accommodations, science expands its horizons, and we expand our sense of humanity and humility.
If you care about promoting a greater diversity of representation in the sciences, then you should read this book. If you care about the quality of science that we produce and about supporting the people who dedicate their lives to this science -- to understanding our universe and answering the big questions that plague humanity, then you should read this book.
Finally, a caveat: I know one of the editors of this book personally. Because of that personal knowledge, I am aware of how much tremendous work and years and years of back and forth with the contributors, multiple revisions, reminders, encouragement, etc. went into the production of this volume. Because of the incredible efforts of the two editors, this book did a remarkable job of striking a balance between maintaining the diverse and often unique voices of its contributors and shining a very informative light upon the current state of disabilities in science.
August 18, 2024
Misleading title, imo, this book gives compelling first-hand accounts of the lives of scientists with various (dis)abilities. Fast read. At times depressing, inspiring, and frustrating. I thought each story was very well-written and wanted more. A meaningful read for those in science and/or academia.
April 29, 2024
Bravo on the first of hopefully many books opening our eyes on this important shared reality! Pursuing the truths in our scientific world require people who understand both adversity and diversity. Science is ever changing and expanding and adjusting, as we are with our own lives. Real people with real needs and real issues who have dealt with and risen above their own adversities are scientists - I truly believe that makes them each better scientists. This collection of stories of scientists who pursue their passions despite personal constraints is a worthy and necessary read.
September 8, 2024
The storeis are much more fun and warm than I anticipated. I found the story elements' subtle attention to the person's struggle very surprising and clever.
The book I assume fits in a unique niche which I find very interesting.
I absolutely love the content warning leaders and artistic representation of each person. That was a really nice personal touch!
The book I assume fits in a unique niche which I find very interesting.
I absolutely love the content warning leaders and artistic representation of each person. That was a really nice personal touch!
January 21, 2024
I love the topic of this book and find it incredibly important for all scientists to read. The stories really make different disabilities come to life and how it tied into science was very interesting. I wish there would have been more stories of scientists who don’t have field experiences and work in labs, but I appreciate this being the first book of its kind. 4.5⭐️
July 13, 2024
I read Uncharted as part of an (undergraduate college) science faculty learning community focused on equity in teaching and mentoring. This group has met 5 times a semester for 7 years, reading a wide range of books and primary literature. This was a wonderful addition to our resources, even helping faculty who have participated in the group but never quite got there in other semesters recognize the ways in which disabled students and colleagues contend with barriers inside and outside the classroom.
August 25, 2023
Uncharted
How Scientists Navigate Their Own Health, Research, and Experiences of Bias
by Edited by Skylar Bayer and Gabi Serrato Marks
Disability is defined by the ADA [Americans with Disabilities Act] as “a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.”
In this book, readers meet several scientists who have various infirmities and how they were mostly able to overcome those disabilities to achieve their work or school objectives.
Each author has a chapter in which they share their experiences as both a scientist and as someone who is considered disabled. The chapters themselves aren’t very long, so the reader is exposed to many different situations.
If I have any criticism, it is the fact that due to multiple authorship the writing can be uneven at times and sometimes I was left with more questions than answers, though I admit that could have been on purpose.
What I most appreciated about the book is that each of the authors manages to do what they need to do, sometimes with help, sometimes without. At times, I felt inspired by what the authors were able to accomplish.
I would recommend this book to anyone who feels they don’t quite fit in or someone who is specifically interested in the subject.
4/5 stars
[Thank you to NetGalley and the author for the advanced ebook copy in exchange for my honest and objective opinion which I have given here.]
How Scientists Navigate Their Own Health, Research, and Experiences of Bias
by Edited by Skylar Bayer and Gabi Serrato Marks
Disability is defined by the ADA [Americans with Disabilities Act] as “a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.”
In this book, readers meet several scientists who have various infirmities and how they were mostly able to overcome those disabilities to achieve their work or school objectives.
Each author has a chapter in which they share their experiences as both a scientist and as someone who is considered disabled. The chapters themselves aren’t very long, so the reader is exposed to many different situations.
If I have any criticism, it is the fact that due to multiple authorship the writing can be uneven at times and sometimes I was left with more questions than answers, though I admit that could have been on purpose.
What I most appreciated about the book is that each of the authors manages to do what they need to do, sometimes with help, sometimes without. At times, I felt inspired by what the authors were able to accomplish.
I would recommend this book to anyone who feels they don’t quite fit in or someone who is specifically interested in the subject.
4/5 stars
[Thank you to NetGalley and the author for the advanced ebook copy in exchange for my honest and objective opinion which I have given here.]
August 23, 2023
Anyone interested in higher education, DEI, or research science should pick up this collection of short essays from scientists with disabilities. I was extremely impressed by the diversity of experiences collected from people with physical, developmental, or mental health challenges. While undergraduate education has made significant strides in accessibility, many institutions still struggle to support the needs of PhD candidates and faculty. Everything about this book, from the illustrations to the organizational scheme, was so thoughtfully considered.
July 14, 2025
Disability is defined by the ADA [Americans with Disabilities Act] as “a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.”
In this book, readers meet several scientists who have various infirmities and how they were mostly able to overcome those disabilities to achieve their work or school objectives.
Each author has a chapter in which they share their experiences as both a scientist and as someone who is considered disabled. The chapters themselves aren’t very long, so the reader is exposed to many different situations.
If I have any criticism, it is the fact that due to multiple authorship the writing can be uneven at times and sometimes I was left with more questions than answers, though I admit that could have been on purpose.
What I most appreciated about the book is that each of the authors manages to do what they need to do, sometimes with help, sometimes without. At times, I felt inspired by what the authors were able to accomplish.
I would recommend this book to anyone who feels they don’t quite fit in or someone who is specifically interested in the subject.
4/5 stars
[Thank you to NetGalley and the author for the advanced ebook copy in exchange for my honest and objective opinion which I have given here.]
In this book, readers meet several scientists who have various infirmities and how they were mostly able to overcome those disabilities to achieve their work or school objectives.
Each author has a chapter in which they share their experiences as both a scientist and as someone who is considered disabled. The chapters themselves aren’t very long, so the reader is exposed to many different situations.
If I have any criticism, it is the fact that due to multiple authorship the writing can be uneven at times and sometimes I was left with more questions than answers, though I admit that could have been on purpose.
What I most appreciated about the book is that each of the authors manages to do what they need to do, sometimes with help, sometimes without. At times, I felt inspired by what the authors were able to accomplish.
I would recommend this book to anyone who feels they don’t quite fit in or someone who is specifically interested in the subject.
4/5 stars
[Thank you to NetGalley and the author for the advanced ebook copy in exchange for my honest and objective opinion which I have given here.]
Displaying 1 - 12 of 12 reviews