Jessica Ping*Disclosure: There are affiliate links in the following article, meaning that, at no extra cost to you, if you make a purchase using the links, I will receive a small commission.
October Book of the Month Review
Disability Visibility: First-Person Stories from the Twenty-First Century
General Thoughts on Disability Visibility: First-Person Stories from the Twenty-First Century, edited by Alice Wong
This book is outstanding. If you are at all interested in learning more about the disabled lived condition, it is simply a must-read. If you’re following me on social media or subscribe to my blog’s mailing list, I am so grateful for your support and interest in my story and experience. That said, my story alone is not going to change the world. Disability Visibility opens up conversations into topics I cannot cover, including cultural, racial, and gender intersectionalities with disability. As a white, average-sized, straight, cisgender, young, disabled woman, my privileges are vast compared to many others within the disability community. I am grateful for this book because it shed light on perspectives I hadn’t before considered.
Now, does that mean this book is 100% the end all be all of disability?
No.
One of the most difficult and fascinating parts of disability is how different each person’s experience is. You could share the same disease with thousands of other people and have vastly different symptoms. So, with that in mind, it’s important to note that this book, though comprehensive, is not enough. The representation within Disability Visibility is a great start, but I’d like to see this book be a catalyst for more spaces to include stories from people with disabilities instead of it being viewed as the one and only (great) source.
Introduction and Overall Structure
The introduction to this book was written by the editor, Alice Wong. She very clearly illuminates both the background and inspiration behind this book while simultaneously expressing its importance to not only the disability community but society as a whole.
September Book of the Month Review
Buy the book:
https://amzn.to/2EyvyLc
“Community is Power”
One specific feature of the introduction I found to be super powerful was the stress placed upon the word “community.” Often, thanks to inaccessibility and the separation of disabled and non-disabled individuals across multiple areas within society, people without disabilities tend to not know many people with disabilities very well. Furthermore, if non-disabled individuals are close with someone or multiple people with disabilities, it is highly possible that the non-disabled individual is unaware of the condition or, at the very least, unaware of the complexities that come along with it.
Important Quote: “Staying alive is a lot of work for a disabled person in an ableist society.”
Therefore, the repetitive usage of the word “community” is VITAL to this introduction because it reminds the reader that the one person or handful of people with disabilities they may have come into contact with during their lifetime are not the only people with disabilities that exist. The disability community is vast and each person who identifies themselves as disabled is unique. So, essentially, Wong is using the Introduction space to remind people that their previous experience with people in the disability community does not mean that they do not have room to grow and develop their understanding of the disabled lived condition.
Being; Becoming; Doing; Connecting
These are the labels to the 4 different sections of this book. Quite frankly, I didn’t understand the need for these separators at first. In my eyes, the stories were all so unique, there was no need to classify them into one of four categories. Upon greater reflection, however, I can see the power introduced by the addition of these words.
November Book of the Month Announcement!
New from the author of the infamous Divergent series!
Chosen Ones
Obviously, from a publishing perspective, breaking text into sections is more digestible to the average reader. It helps many individuals better contextualize a piece and understand its overall goal. But, with this book, I don’t believe that the inclusion of categories was simply a structural/layout decision; I believe the words chosen highlight something greater.
I believe the words distinguish the historic story of disability:
- Being – People with disabilities have existed forever.
- Becoming – People with disabilities coming into themselves and fighting for their rights.
- Doing – People with disabilities being welcomed (on the surface) into society – jobs, accessible seats at events, etc
- Connecting – where we are now – trying to prove our worth to our non-disabled counterparts and prove our inherent value and individuality.
Now, this is just my take, and perhaps I am looking at a simple decision too deeply, but I don’t think it’s a total coincidence either. If I am correct, the book holds a lot more meaning than I gave it credit for in my original read-through. If I am incorrect, the words are still powerful and provide a guide on how to read the book that allows for deeper understanding and conversation.
My Top 5 Featured Stories
I want to be very clear, I LOVED pretty much all of the stories save one or two. Narrowing down my discussion points to 5 was a challenge. The list below includes 5 stories that I either connected with or learned the most from.
August Book of the Month Review
1. Lost Cause – Reyma McCoy McDeid
In this story, Reyma discloses the many ways in which she was made to feel like a “Lost Cause” throughout her life. While I am lucky to have the world’s most supportive and uplifting parents, I still was able to relate to this story like no other within this book. Every aspect of our systemically ableist society is built upon the fact that one’s ability to move, behave, think, and act “normally” is directly connected to a person’s inherent worth as a human being.
This is a story of overcoming the expectations of the non-disabled community. People with disabilities are not expected to succeed, and when we do, it’s breaking news material. When we overcome the challenges put in our way by our ableist society, we are given a pat on the back and used as poster-children for how accessible and kind our world is towards the disability community. What I love most about this story is that the author challenges the classic narrative by showcasing that her success is her OWN.
Important Quote: “Lost cause, indeed.”
2. The Erasure of Indigenous People in Chronic Illness – Jen Deerinwater
Did you know cancer was the leading cause of death for indigenous women or that 84% of indigenous women experience some form of abuse in their lifetimes? I didn’t. This story by Jen Deerinwater opened my eyes to many of the horrific health concerns facing indigenous peoples across the United States. Specifically, the biggest issue being the lack of adequate, prejudice-free healthcare available both directly on reservations and in American cities.
As it is October and we just celebrated Indigenous People’s Day last week, I believe that this story was a fantastic addition to the education I sought out previously. My knowledge was extended to include the disability community, which, from the sounds of it, is an even more marginalized group within the indigenous communities.
Important Quote: “But since the U.S. government was designed to kill us, literally and metaphorically, the medical industry is continuing to fulfill that mission.”
July Book of the Month
Girl, Stop Apologizing: A Shame-Free Plan for Embracing and Achieving Your Goals
3. Radical Visibility: A Disabled Queer Clothing Reform Movement Manifesto – Sky Cubacub
Dress reform has helped shape multiple social movements over the past century. So, especially for a community that relies so heavily upon adaptability, it makes sense that a proper dress reform could seriously make a difference in advocates for disability rights’ efforts to acquire equity. In this story, the reader is taken on a visual trip of what stylish, accessible clothing both could look like and accomplish for the disability and queer communities. While reading it, my heart started racing in excitement. I would love to see the fashion industry begin to take adaptive needs into consideration with their lines. Not only would representation improve (something desperately needed in the fashion and entertainment industry), but education would, as well, most likely ensuring people with disabilities had better access to clothing that they actually enjoyed wearing out and about.
Important Quote: “Physical Visibility is an important step toward political/social freedom and equality.”
4. The Isolation of Being Deaf in Prison – Jeremy Woody, as told to Christie Thompson
The penal system has desperately needed reform for decades. Before reading this story, I ridiculously had never considered the idea of a physically disabled or deaf person being in prison. Hollywood is partially to blame for this, as I’ve never seen a disabled inmate on the big screen. That said, my own ignorance is definitely involved, too. Hearing about this man’s experience enraged me. How can we allow this to happen to another human being? Are we any better than the prisoners that broke the law if we completely disregard another human’s basic needs?
As soon as I completed this story, I had to physically set the book down and take a moment to breathe. My mom was in the room and asked what was wrong. I instantly went on a tirade about the penal system, and specifically what I had just learned from Jeremy’s lived experience. We can do better. Hell, we must do better, and being educated on experiences like Jeremy’s provide the first level required for change: awareness.
Important Quote: “It felt like every time I asked for a service, they were like, ‘F*** you, no, you can’t have that.’ I was just asking for basic needs; I didn’t have a way to communicate. And they basically just flipped me the bird.”
June Book of the Month
The Ballad of Songbirds and Snakes (A Hunger Games Novel)
5. Unspeakable Conversations – Harriet McBryde Johnson
I debated whether or not to include this story in my blog post. One reason is that I believe it is the oldest story in the book and I am not sure how 17 years holds up when it comes to discussions that are constantly evolving. Secondly, and more importantly for the sake of this review, I am still not sure what to make of this story. It’s a true account of a disability advocate coming face to face with a eugenics level of ableism, literally. Harriet, an attorney, must debate a professor in front of his students on infanticide, or the killing of babies after birth. The ideas behind his argument include the archaic belief that people with disabilities lead horrible lives that are not worth living. As someone whose parents knew I had challenges while I was still in the womb, it’s always difficult to hear of a person or group of people who believe that it would be better if I did not exist. This story required me to feel all of those feelings while also untangling the complicated response Harriet had to the confrontation.
The following portion of the text is what I am still grappling with:
“If I define Singer’s kind of disability prejudice as an ultimate evil and him as a monster, then I must so define all who believe disabled lives are inherently worse off or that a life without a certain kind of consciousness lacks value. That definition would make monsters of many of the people with whom I move on the sidewalks, do business, break bread, swap stories, and share the grunt work of local politics. It would reach some of my family and most of my non-disabled friends…”
p. 26
I both agree and disagree with this. It’s hard not to view people as monsters who question your right to life, but I also know that there are many people in my life who, if questioned on the subject, would make similar statements. I don’t know my feelings on this story, yet, and, quite honestly, I might never. That said, it’s still an incredible read and is guaranteed to at least lend insight into one of the worst forms of ableism. It is actually the first story in Disability Visibility, which may seem somewhat abrasive given the content, but it is also 100% completely perfect because it forces the reader to take the book seriously right from the beginning.
Important Quote: “But I have trouble with basing life-and-death decisions on market considerations when the market is structured by prejudice.”
Honorable Mentions
**Live, in-depth discussion of these honorable mentions to take place on Instagram on October 20, 2020 at 12:00 PM EST – footage to be posted here upon completion.
- There’s a Mathematical Equation That Proves I’m Ugly — Or So I Learned in My Seventh-Grade Art Class – Ariel Henley
- On NYC’s Paratransit, Fighting for Safety, Respect, and Human Decency – Britney Wilson
- The Beauty of Spaces Created for and by Disabled People – s.e. smith
Why You Should Read Disability Visibility
There are many reasons why I recommend you pick up Disability Visibility, but, the most important reason is this:
It is one of the only books written by multiple people with disabilities on a variety of intersectional topics of disability. Therefore, it is a wonderfully comprehensive introduction to the subject of disability and will provide a strong foundation as you seek to educate yourself into the future.
Disability rights are only starting to be taken seriously. In the years to come, I expect to see disability become more integrated into human rights discussions both here in the United States and around the world. As technology continues to improve, our presence and opportunity will only increase. Take the time to educate yourself now so you can be an ally as we push forward into the future!
Buy Disability Visibility!
Let’s Connect!
Have you read Disability Visibility: First-Person Stories from the Twenty-First Century, edited by Alice Wong? If not, are you interested in reading the book upon completing this commentary and review? Let me know your thoughts by LEAVING A COMMENT BELOW.
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