Book Review: Uncharted

 

Image: the cover of the book is a cream background with a purple line curving back abd forth across the cover before shooting up to the right and fading to light blue. In large black letters is the title "uncharted" and below that in red letters in between the curves of the purple line is, "how scientists navigate their own health, research, and experiences of bias." Across the bottom in yellow letters is, "edited by skylar bayer and gabi serrato marks"

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 goodreads.