Reading with My Ears Book Review

The anthology Disability Visibility: First-Person Stories from the Twenty-First Century edited by Alice Wong has been on my audio bookshelf to read for months now. I finally stopped procrastinating and red this remarkable collection of writings by disabled and chronically ill activists, artists, and authors. The topics are as diverse as the type of disability presented. The 30+ entries cover technology, incarceration, fashion, homophobia, medical issues, organizing strategies, psychotherapy, racism, relationships, sexism and so much more.

Purpose of the Anthology

Wong is a disabled activist, media creator and research consultant. She is also the founder and director of the Disability Visibility Project, an online community supporting and amplifying disability media and culture. In the introduction, Wong shares about how story telling itself is an activity not an object. It is the closest we can come to a shared experience. She shares about how she didn’t grow up as part of the ADA generation. Rather it was her collection of stories about people with disabilities that helped grow her sense of community and connection. She wanted this book to reflect and contribute three things:

1.  More stories about the disabled in the present while honoring the past.

2.  More stories about every day disabled people verses highly profiled ones in the disability community.

3.  Increase the diversity of the mainstream representation of disability which is mostly white and male.

The book is divided into four parts:  Being, Becoming, Doing and Connecting. This anthology is not a disability 101 guidebook or the best of list. Wong makes it clear that these stories are not meant to explain disability and are not here to inspire, motivate or encourage the reader. Rather it is the disabled speaking in their own words about being disabled. The stories come in various forms such as:  essays, speeches, an interview, a eulogy, statement and call to action. Content notes are provided for self-protection   and access so the reader is given a heads up that the material might be difficult to read or triggering. This allows the reader to skip around and select the stories that are the most interesting or compelling. Unlike others, I read through the whole book from beginning to end. I wanted to hear about the lives of others with disabilities to feel a sense of connection and community. In this post I am featuring a few of the entries that resonated with me.

Part One Being

In part one, Being, the entry titled When You Are Waiting to be Healed hit a nerve with me because of its relatability. The author deals with a vision challenge called nystagmus where the eyes move around uncontrollably. She shares about her family and religious experience in looking to God to heal her vision problem. Boy, could I relate to this story! In the early days of my blindness, I was there too. Praying for healing and understanding because I was confused about what was happening to me. People around me praying and telling me to be faithful that God would heal me.   But as my vision got worse, I had an aha moment. I realized this was going to be my life. Not that I stopped believing in God or prayer I just started focusing on learning how to live differently. The author shares that she was not a mistake waiting to be fixed and I totally agreed. I don’t look at my disability as something that I need to be healed from anymore. I don’t think that I need to be fixed or changed in anyway. I think this is exactly how I should be, and I embrace the beautiful life that I live.

Another similar story was I’m Tired of Chasing a Cure. Since my vision loss was due to an auto immune condition some people felt I should have spent more time researching cures and remedies. I just didn’t feel the need. The author brings up some powerful questions such as: how do we feel about ourselves? How do we feel when abled body people start advocating for cures which could eliminate our people entirely? These are some thought provoking questions and it is not that disabled people don’t desire a cure, but it would dominate their time. There would be no time to live. The author says the cost is too high because I miss living my life while chasing cures. This is so true. I have seen folks in the blind community spend a lot of time researching eye treatments, seeing various doctors, and having multiple surgeries to find a cure to their eye condition to the point they stop living.  They also lack basic blind skills that could help them live a better life. Sometimes I think that maybe this is a part of the denial/acceptance phase of things. Yes, I know that being blind is not the sexiest thing in the world, but it is what you make it. It is about perspective and attitude.

Part Two Becoming

In part two, Becoming, Nurturing Black Disabled Joy was an insightful read because the author was so transparent about not always having joy. She said that “hope is my favorite word, but I didn’t always have it. My joy is my freedom.” We live in a world where we assume that joy is impossible for disabled people. That sadness, depression, loneliness, and shame are the only feelings. People wrongly assume the life of a disabled person must be miserable, But I tell folks all the time I have met many an unhappy, bitter, and pissed off sighted person. So, what does that say? We are all human beings and feel a range of emotions. The disabled are no different.

Part Three Doing

In part three, Doing, I absolutely loved the entry Why My Novel is Dedicated to My Disabled Friend Maddy. I felt a sense of connection because this author is a writer trying to get their book published. The author has a brain injury that makes using a computer screen hard. I appreciated the emphasis on interdependence where we rely on each other focusing on strengths. Too many times in society we have the “pull yourself up by the bootstraps” mentality but in reality, that doesn’t work. Maddy, a friend with a similar brain injury, helps the author edit the manuscript.

I could identify because in the blind community we do the same thing. One person might be totally blind and another low vision. We get in there and help each other with what needs to be done. As a writer, I could also relate because I have had to reach out to get additional support. I have had friends or paid assistance with reviewing my writing, taking pictures for my blog, or brainstorming writing ideas. Even this website and blog was not created by my efforts alone. I got help from others.

The author presses the need for more stories written by, about and for the disabled. I agree. Disabled success is not just about one person as portrayed in the media but many people behind the scenes helping to make the disabled person successful.

I don’t have the same exact disability as the author of Six Ways of Looking at Crip Time. Yet, I understood the need for extra time. I just never looked or thought about it as Crip time; that is time needed because of my disability. I find myself needing those extra moments in the morning to get up and get ready especially as I get older, and my body moves slower. I also need it in the afternoon. I find myself slow and sluggish around 3 p.m. and literally must lay down for a nap.

I have always noticed it in my writing. I have never been a fast-moving journalist. I knew back in college before I even became disabled those tight-type reporter deadlines were not for me. I preferred writing with a much longer lead time like for magazines or newsletters. Now, having a disability I see I am a slow writer. Pondering what I am going to say, listening closely to my screen reader, and monitoring my fingers snugged tight in a hand brace relieving my carpal tunnel

For many years I have advocated for better transportation. So, when I read the entry on the para-transit system in New York City I was nodding my head through the whole thing. I was like a parishioner in the amen corner at church, saying, “Yes, that is right.” Late pick-ups. Long ride around times. Drivers who don’t offer assistance. Poor route planning. Filing numerous complaints. Even being on TV and in the newspaper. Yes, I have done all those things too just like the author. However, at the end when she vividly described the driver using a cup to urinate in front of her on the bus that was it for me! The weird thing is I was not surprised because I had a similar experience.  Not on PARA-transit but in an Uber car. I felt some of the same feelings as the author. Why did the driver wait until I was the only one left in the car to do this? Why didn’t he stop along the way to go to a bathroom? If I were a sighted white woman, would he have done the same thing? IF he would stoop this low, what other things would he do? And, no I do not want you to touch any of my belongings or take my hand. Unlike the author I was not too concerned for my safety. I think I was too mortified to think about that, but she brought up a good point about vulnerability because this person was exposing himself. Things can happen to women and specially to disabled women. Like the author I did file a complaint with Uber but not much came of it except an apology and that they would ensure I would not be matched up with that driver again.

Part Four Connecting

In part four, Connecting, I agreed with the entry titled The Beauty of Spaces Created for and by Disabled People also called crip space.  This is a spot where you don’t have to justify or explain your existence. A place where disability is celebrated and embraced. Some think it is radical or tabu. The fact that we need our own space is disconcerting to people who can’t relate. The question becomes why you would want to associate with people like that. Perhaps for newly disabled people this kind of space would be overwhelming and uncomfortable. But for folks like me who are 20 plus years in the game being in a “crip space” can be quite reaffirming and enjoyable. It is because I feel comfortable in my skin and feel no shame around being blind. I have found my life as a disabled person fulfilling, happy and even adventurous.

As a matter of fact, I will be entering into my “crip space” next month when I attend the American Council for the Blind’s national convention. It will be my third year attending. This event is an opportunity for thousands of blind and visually impaired people to gather to talk, share, advocate and build bonds around blindness.

All the entries in this anthology communicate a wide array of experiences. Each an invaluable snapshot into what it is to live with a disability. The day-to-day struggles and joys of navigating the world through it. This collection of stories emphasizes the importance of sharing, writing, and documenting our own stories of life, love, joy, and pain.