Category Archives: Reading with My Ears Book Review

Disabled Author Confronts the Church in My Body Is Not a Prayer Request

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A blue church with a steeple.

In July 2008, I was interviewed for an article on disability and religion for the Atlanta Journal Constitution. When the reporter spoke to me he asked me to describe the problems I was having attending and participating in church. Prior to my interview  other disabled people exposed the physical barriers. However, my story was different. I shared about the isolation and loneliness I felt going to church.

Active member Since College

You see, ever since I was a college freshman I was an active member of my church community. Attending services  and Bible study weekly, tithing regularly and participating in church activities like choir, campus and single ministry events. Even volunteering to serve in children’s  church. My dedication and commitment didn’t stop even after losing my vision. I continued to be an active member of my congregation. But by the time the reporter talked to me for that AJC article I was about done. I was exhausted  and was losing my desire to be a devoted parishioner.

Now, let me be clear. I was not struggling with my relationship with God per say. It was more about His people and how they treated me because I was disabled. This is why the audiobook My Body Is Not a Prayer Request: Disability Justice in the Church By Amy Kenny, spoke so deeply to me. The author is disabled  and a Christian. She writes  her story from this perspective. She gives many examples of how her body  is used as a call to action to the church. She wants change and the church to be more inclusive.

Kenny is physically disabled, using a cane and motorized scooter, she not only shares about the physical but attitudinal barriers  and microaggressions Christians  impose on people with disabilities. This goes back to my explanation to the AJC reporter. Let me give you some examples from my own life.

My Life Examples

  • A woman was walking in my subdivision and stopped me as I was getting into my ride. She gave me unsolicited advice she got from God to tell me to eat more carrots and drink more water to cure my vision loss.
  • A man got angry  when I didn’t stop to here his healing testimony. I was trying to board the bus with my groceries and didn’t have time. My bus driver was miffed because he only shared it with me, as if disabled people needed spiritual encouragement more.
  • A woman frantically flagged down the car I was in in the Walmart   parking lot. She wanted to pray for me. She saw me walking and getting into the vehicle with my white cane. She thought I needed prayers. When she was told this was highly inappropriate she got defensive and annoyed.

Already Healed and Made Whole

A disabled man at a church service. He is sitting in his wheelchair in the aisle next to one of the pews.

Kenny strongly communicates that people with disabilities don’t need to be fixed, cured or healed. As believers our bodies are already sanctified and whole. We  are already  new creations in Christ. She asked do we need to call these kinds of behaviors out or just take the high road?

I have done a little of both. I realized that my congregation  didn’t know what to do with me or people like me. Sometimes they did nothing. Other times it  was the wrong move  causing emotional harm. Still other times, I called it out receiving an apology  with a commitment to change.

What I came to realize, and Kenny too, is My disability doesn’t need to be erased in order for me to have a full, happy and abundant life. This thought  not only shows what people think about me but also reveals people’s notions about God. Kenny says people don’t focus on Biblical passages where disability is celebrated because it doesn’t fit their narrative. Instead there is a  concentration on those scriptures where  disability is a result of sin and disobedience. We are uncomfortable around disability.

Challenges Not Just in Church

Kenny shares how these thoughts and attitudes are not just in the church. She goes into great detail about her personal life. How she wasn’t believed  during doctor visits. How she dealt with housing discrimination. How she was hindered at the DMV from getting her disability  car tag. I have dealt with similar  situations too. I got used to it because this is how the world operates. Yet, when it comes to church I was expecting a different outcome. I was expecting a better result. Since we are called to be like Christ I was looking forward to encouragement, love, grace   and embracement. I already knew the world would b hard on me but I was shocked and deeply saddened when the same things happened at church too.

Kenny is calling the church to change. I applaud her for that. The work and effort she is making to make the church a more inclusive place is admirable. But I have to say I have moved on. Perhaps she is more optimistic than me. I have left the church all together and don’t attend worship services anymore. The constant battle with the church plus the world was too much for me.

Don’t Attend But Made Peace with Church

Empish sitting on mat in a yoga prayer pose

Today, I have made peace with the church. Even though I don’t attend anymore  I still believe in community worship. Perhaps  one day things will change and I will  want to come back. But in the meantime, I honor my relationship with God by the way I live my life and treat others. Since I know what it feels like to be on the other side, I work  daily to be kind, considerate  and nonjudgmental.

If you want to understand more about disability  and the church, I highly suggest you read this book. Kenny  gives numerous examples of ableist behavior. She also gives tips on how to be a better Christian ally to those of us with disabilities.

Can You Bluff Being Blind? Read My Review on  James Tate Hill’s Memoire

Daily Living, Literature, Reading with My Ears Book Review, , , , ,
a blind woman wearing sunglasses and holding a white cane

The definition of the word Bluff, according to WordHippo, is an attempt to deceive someone into believing that one can or is going to do something. It is bravado or bluster that is superficial or not backed up. So, can you successfully bluff your way through life? What about a particular situation? How long could you do it before exhaustion or reality sets in? Or what about someone discovering and calling you out? Lastly, why would you do it in the first place?

Emotionally Challenging Book

Empish holding book on Blind Tom

These are some of the questions that ran through my mind as I read the book, Blind Man’s Bluff   by James Tate Hill. I have read many books on blindness over the years, but I have to say this book frustrated and annoyed me the most. I struggled finishing but knew I needed to soldier through to write this review. When I write a book review I work hard to focus on the positive elements in the story and try to understand  the author’s perspective. However, this book was emotionally challenging.

I know most people have occasionally bluffed there way  through something. Me included. However, Hill’s story of his vision loss was a bit extreme. I am getting ahead of myself and haven’t even told you what the book is about. So, let me do that first and then share my review.

Book Summary

Display of NLS Talking Book Player, Cartridges and Earbuds
Display of NLS Talking Book Player, Cartridges and Earbuds

The audiobook is available at Bookshare and the National Library Service for the Blind and Print Impaired . Bookshare says, Blind Man’s Bluff is a male writer’s humorous and often-heartbreaking tale of losing his sight—and how he hid it from the world. At age sixteen, Hill was diagnosed with Leber’s hereditary optic neuropathy, a condition that left him legally blind. When high-school friends stopped calling and a disability counselor advised him to aim for C’s in his classes, he tried to escape the stigma by pretending he could still see.

In this unfailingly candid yet humorous memoir, Hill discloses the tricks he employed to pass for sighted, from displaying shelves of paperbacks he read on tape to arriving early on first dates so women would have to find him. He risked his life every time he crossed a street, doing his best to listen for approaching cars. A good memory and pop culture obsessions like Tom Cruise, Prince, and all things 1980s allowed him to steer conversations toward common experiences. For fifteen years, Hill hid his blindness from friends, colleagues, and lovers, even convincing himself that if he stared long enough, his blurry peripheral vision would bring the world into focus. Finally, at thirty, faced with a stalled writing career, a crumbling marriage, and a growing fear of leaving his apartment, he began to wonder if there was a better way.

Concept of Bluffing

Fifteen years is a long time to pretend to be something you are not. But I know people do it everyday. This book  caused me to think hard and deep about  the concept of bluffing. Hill spent Too much energy pretending, or some would call passing, as a sighted person. I was amazed  at the elaborate methods  and schemes he use to keep people from knowing how bad his vision really was. At one point in the book, he explained he would rather let people think he was a drunk butthole  than blind. Now that is pretty deep. It made me question what type of world do we live in when it is better to be a drunk butthole  than blind?

For the Benefit of Those Who See Book Cover

I have known for years vision loss is equivalent to the fear of public speaking. People feel they would rather die than go blind. There is an inherent fear of blindness in our society. So, I get it. After all I lost my vision after 25 years of seeing clearly. I do understand and have some empathy. But this is the thing. . Pretending to see when you can’t is dangerous. Not only physically but mentally. We live in a sighted world  and have to learn how to adjust. Perhaps bluffing is a form of adjustment? But for how long?

I remember when I first went blind, I did the whole “fake it to you make it.” That approach worked for a while but I couldn’t sustain it long. After a while it became mentally wearing and I had to disclose my vision impairment. No, it wasn’t easy. Yes, I had to explain more than I wanted. But at the end of the day people  got it and I was able to conduct my business and get my needs met. If you are pretending all the time I seriously doubt  the results will be in your favor.

People Looked the Other Way

Another aspect of the book that frustrated me was how complicit Hill’s family, friends, teachers and co-workers were in his bluffing. Over and over again there were examples when people in his life literally and figuratively looked the other way. People knew he had a vision problem   and really didn’t talk or confront him making the pretending last longer. Plus there was no mention of therapy or counseling. All of this were missed opportunities  for Hill to get needed support. A disabled life is hard and having a circle of support  is critical to being happy and successful.

Disability Visibility Book Cover

Reading about Hill’s life triggered this question-are societies ideas of the disabled that awful? Do we need more positive and real role models for people to see the possibilities? I’m not talking about inspirational porn rather images of people living their life as capable disabled people. We are lacking in this but I do see improvements.

Can’t Bluff Blindness

By the end of the story Hill is coming to an understanding. It is harder to pretend than just be real. He  is noticing how much he is losing in his life. So, the answer to my initial question, can you bluff being blind is no. Well, maybe for a while but it won’t last and you will miss out on the beauty of what life  has to offer.

Confused About Disability? Read This Demystifying Guide  and Become a True Ally

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Books on desk with cup of tea

Reading with My Ears Book Review

I have read a lot of books about disability. Some were fiction while others  nonfiction. Some  were biographical, technical, historical  or medical in their approach. Others more laid back and conversational in tone. But the book, “Demystifying Disability: What to Know, What to Say, and How to Be an Ally” by Emily Ladau was one of the more real, true to life  and informative books I have read on disability so far.

In the audiobook read by Emily herself, she  provides an approachable guide to being a thoughtful, informed ally to disabled people. She gives real actionable steps for what to say, what to do and what not to do. Through her kind but candid tone, Emily shares how you can help make the world a more inclusive place. .

I was excited to read this book. Partly  because of my previous  interaction with the blog Rooted in Rights, where Emily formerly was an editor. But more importantly  because I am disabled  and wanted to hear her  strategies on how  people like me can learn and find the language to interact with people who are not disabled.

Definition of Disability

In the first chapter Emily gives her definition of disability along with other advocates  and the ADA’s official language. While reading, it dawned on me that I don’t have my own version of a disability definition. I have just gone with  the status quo and/or the legal definition. Yet, one size fits all doesn’t work in the disability community. We are as diverse and different as any other community. For so long society has used a broad paint stroke  however in reality that doesn’t work. It depends on the individual.

Two women have a sign language conversation at a table.

Additionally, there is no single way to talk or think about disability. Emily said the way we talk shapes how we think; and the way we think shapes how we talk. For example, some people don’t want to use the word disability because it has a negative connotation. We are socialized to think that way.

Terms and Labels

But it is unavoidable because we  are still disabled in the end. There are nondisabled people making up terms for our community. Terms like differently abled or  handy capable. Rather just ask for what the person wants to be called.

Little Black Girl Wearing Braids and Walking with White Cane

In my world,  phrases like legally blind, low vision, sight loss, visually impaired, blind, and vision loss are the terms most often used. I prefer the word blind because it is clear, simple and to the point.

She cautions readers the usage of labels. A very popular label is high functioning verses low functioning. This kind of label pits one disability group against another. For the sake of this review, I am considered high functioning because I can read, write, manage my daily activities, work, etc. I need very little assistance from others to maintain my life. But viewing me this way can be harmful because it looks down on others who can’t do the same. At the end of the day,  we all have some kind of limitation.

Also, services have been denied me because I am too independent or high functioning leaving me to fend for myself. We have to take into consideration  over time this situation can change. As I get older I might need more assistance because of aging with a disability.

Remove Negative Words

Emily encourages us to  Work on removing negative words from our language. Harmful words like stupid, idiot , lame, crazy, midget, albino, insane, retarded,  crippled and dumb. A recent example  of this is when the music artist, Lizzo changed her song, “Grrrls” to remove the damaging word “spaz.”

She explains disability is not an insult. Phrases like quit being so OCD, what’s the problem are you blind, and falling on Deaf ears can enter our psyche without us realizing it but in the end  can be toxic. Now this can be confusing because some disabled people reclaim  these words, terms and phrases. So, it is best to use  safe words  and ask the disabled person what they want to use.

Disability Identity

Disabled Black Man in Wheelchair Boarding Bus
Disabled African American Man In Wheelchair Boarding Bus

Now with that being said, let’s look at disability identity. Emily describes disability identity as a pizza. The crust is  the foundation; it is who you are. The specific toppings  of meat and veggies make each pizza unique. No two slices are exactly a like, cut a pizza and one  slice might have more pepperoni   or olives on it than another.

Some people choose to identify  and make it known they are disabled. They might even fully immerse themselves in the disability community. Others might identify  only when it is necessary. Still others might not identify at all. Then we go even deeper and address intersectionality  where you have a disability  along with something else. I am blind, female and Black. That makes me a member of three different marginalized communities.

Disability History

Her chapter on disability history touched on the story of Judy Heumann, which I talked about in a previous post. She also highlighted the Ugly Laws, advancements in educating  disabled children  and of course the ADA. She noted several laws  before the ADA  which  amazingly  I was already familiar. As a high school senior, I worked  part-time for the Department of Health and Human Services/office for Civil rights. There I learned about  the Rehabilitation Act of 1973 and Section 504. I typed up lawsuits  based on discrimination  and assembled paperwork for voluntary compliance. Who knew in 10 years I would be recalling this work experience as I navigated my own disability.

an outline of a shield with the American flag in the center and the wheelchair icon on top of the flag. The letters ADA are to the right side and the words Americans with Disability Act underneath.

She presented a timeline featuring the closure of shelter workshops and the launch of the Autistic Self Advocacy Network. The Communication and Video Act opened up audio description  and more accessibility to the internet  and phone apps. She remarked on the Able Act  and how it  provides more financial control allowing disabled people to save money without penalty.

Avoid Ableism

She devoted a whole chapter to ableism. I liked the fact she owned up to her own missteps. As people with disabilities, we can be insensitive  to other disabled people too. Ableism can exclude us from larger  discussions of injustice. Since many of us carry multiple identities we must be included in other social justice movements too.

The Curb Cut Affect

When we think of the disabled the immediate thought is ramps and elevators. But accessibility is having full use and experience of the product or service. Accommodations are provided and come in many forms. Accessibility is not about special treatment but providing equality  so that all people  can  take full advantage. Everyone can play a role in making the world more accessible  and everyone can benefit.

Think about the curb cut affect. Initially  curb cuts were for people in wheelchairs only but today  all kinds of people use them. Parents with baby strollers, People rolling backpacks  or luggage on wheels. Another example is audio description. This  technology was  designed for people with vision loss to enjoy and understand  movies and TV but sighted people also use it  when multi-tasking and not actually watching the screen. To make the world more accessible and inclusive we need more figurative curb cuts.

Disability Etiquette 

What do I do when I meet a disabled person? This is the million dollar question. There are guidelines to disability etiquette  however don’t over think it. Ask questions  and be open to learning  and receiving instruction. Don’t make assumptions about what people can and can’t do. People that insist on helping cand cause more problems in the end.

Empish Holding White Cane at Street Intersection

Emily  warns abled body people to not assume we are faking our disability. I have come across this one  a lot. People assume I can see more than I can  or I’m not blind at all. I get the response, “Well, you don’t act like a blind person.” My reply is, “how does a blind person suppose to act like?” People are looking for  the stereotypical image  of what they have seen in the media  . But blindness doesn’t work that way.

Disability in the Media

Which leads me to disability in the media. We don’t have nearly enough true to life images  but plenty of media tropes. Such as inspiration porn which objectifies people with disabilities to help people feel good about themselves. It is those stories of people who overcome their disabilities  against all odds. We buy into inspirational porn because we have been told disability is a bad thing and living with a disability is exceptional. I have even fallen prey to it myself by being inspired by other disabled people , it is everywhere

Final Thoughts on Becoming an Ally

A woman in a wheelchair wearing a red sweater and black framed glasses. She is along side another woman working with her on a computer

Reading this book is just  one important step and not the conclusion to becoming an ally. None of us are experts on disability. Being an ally is a show don’t tell approach. But ask yourself why first. What is your motivation? Are you feeling guilty, pity or  wanting to be helpful? These reasons can be self serving. Help is a stereotype about the disabled community. We are not always helpless or in need of saving.

Being an ally is a commitment to change. It is a journey not a destination. Keep in mind to advocate with us  not for us. And as you do, read books, watch documentaries and listen to podcasts.

Deaf Culture Facts I Learned from Reading True Biz

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Two people having a sign language conversation over the computer. One person is at a table and the other is on the computer.

Reading with My Ears Book Review

I recently joined Book Nation for another virtual discussion about the book  True Biz by Sara Novic. The conversation with the author, who is deaf, was noteworthy because she shared about her life and the writing process for the book. But reading The audiobook was such an educational and intriguing read. First, she recorded the sound of ASL dialogue to differentiate from spoken dialogue. Before  this I had never read an audiobook  about deafness where I could hear the  sound of sign language. It made the experience more realistic.

Second, I learned so much about deaf culture  and the deaf community I didn’t know . Although, I am blind, I don’t take for granted I know everything about other types of disabilities. I took this reading as an opportunity to be entertained and learn.

Book Summary

True Biz focuses on three main characters. Charlie, a rebellious transfer student who wears cochlear implants and has never met another deaf person before. As a result, she struggles with communication with the limited sign language she knows. Next is Austin, the school’s most popular kid because of his family lineage  of deafness, but his world is rocked when his baby sister is born hearing. Last is February, the hearing headmistress, a child of deaf  adults (CODA) who is struggling to keep her school open and her marriage intact, yet unsuccessful at both.

The students at the River Valley School for the Deaf are typical kids. They just want to hang out, pass their finals, and have adults stop telling them what to do with their bodies. True Biz is a  story about sign language and lip-reading, disability and civil rights, isolation and injustice, first love and loss. This is an unforgettable journey into the Deaf community and a universal celebration of human connection.

Chapters were separated by the voices of the three main characters with sections on deafness inserted. These sections I found the most interesting as they educated me on deaf culture. Novic was initially resistant to adding these sections to a novel but later reasoned that the hearing community  would  likely have no working knowledge of deaf culture and without  information would lack understanding and empathy. She was right. Here are some of the facts I learned from reading this book:

Finger Spelling Doesn’t Count

1. Use finger spelling only for proper nouns and names. You should look at the shape of the word not the individual letters. This technique is very similar to learning braille. Although my braille skills are limited when I was learning it I was encouraged to not touch letter by letter but get the feel of  the whole word. This would increase my speed and reading comprehension.

Two women have a sign language conversation at a table.

Here’s a fascinating bonus fact I learned about myself. I was a sight speller before I went blind. If the word looked correct then it was correct. Over the years my visual memory  has decreased impacting my spelling. As I was reading this book, I struggled a bit with Charlie. Since she was a finger speller  and her sign language  skills were not sharp. She spelled out everything and I would sometimes get lost in what she was trying to communicate. I would have to rewind  portions to hear exactly what she said.

Meaning of True Biz

2. True Biz is an idiom in ASL. Meaning, in context it is something different than the denotation of the constructed signs and hand shapes. It means true business, seriously, literally, no kidding and real talk.

Deaf Cures

3. The variety of cures for deafness were just as broad  and creative as those I have heard for blindness. One was to insert olive oil, red led, bat wings  ant eggs and goat urine into the ear. Then you have faith healings like the time Jesus healed a deaf man in the Bible. Harsh chemicals like mercury were used. One particular healing technique was to fly the deaf person upside down to correct pressure on the ears. Lastly, we have hearing aids, cochlear implants and stem cells. Early models of cochlear implants actually destroyed residual hearing, and  success could vary  widely. When it comes to stem cells the questions of ethics   and consent arise. Who gets to decide if stem cells should be used or  not for deaf children?

ASL Influenced by France

4. The usage  of what would be later called American Sign Language  (ASL)  was greatly influenced by a sign language teacher named Laurent Clerc  from France. Deaf Schools there were using sign language and when Thomas Hopkins Gallaudet, who later founded America’s first school for the deaf, came to learn and observe  he brought  those techniques back to the United States. I thought this fact was interesting because braille came from France too.

Manual Verses Oral Communication

5. Late 19th Century manual language verses oral communication for deaf children was a hot button topic. The thought was if a deaf person could learn how to speak they could better assimilate into  the dominant hearing society. Also, there were strong beliefs around eugenics, championed by Alexander Graham Bell, who had a deaf wife and mother. It was used to forcefully sterilize disabled people. Bell was not a proponent of sterilization. Instead, he believed if deaf people talked  rather than sign they would be more likely to not marry each other and produce more deaf children.

Banning Sign Language

6. In 1880 educators gathered  in Italy to determine deaf education. It was decided to ban sign language worldwide. This ban would be in place for the next 80 years. Some schools like Gallaudet, pushed back and resisted but many others stop the usage of sign language. The history of braille has some striking similarities. Initially blind children  learned how to read by touching raised embossed letters. This process was painstakingly slow. When Louis Braille invented his code it was initially rejected partly because sighted people  couldn’t read and understand  the formation of the raised dots on the paper.

Interesting, how abled body people assume they know best when it comes to people with disabilities. This of course is ableism and can cause great harm.

Punishment for Deaf Children

7. Deaf children were forbidden to sign. If they did, there was severe punishment. Hands were tide, tapped with rulers  or slammed in desk drawers. This decision resulted in fewer deaf teachers, role models or professionals for deaf children to emulate. Further stigmatizing deafness in society.

Black Deaf People Communicated Better

8. I knew that Black deaf people had their own version  of sign language, called BASL. But  one fact I didn’t know  was during the oralist period  they were better communicators. White deaf people were forbidden to use sign language and to speak only. So, sign language teachers  went to segregated Black deaf schools and taught them sign. This resulted in them learning how to communicate better.

These are just a few of the facts I learned from reading True Biz. Learning something while being entertained   was enjoyable. If you are curious about deaf culture  and love a good story, I highly recommend  this read.

New York Times Columnist Shares Insights on Vision Loss and Found

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Books on desk with cup of tea

Reading with My Ears Book Review

I came across another excellent audiobook read from the library by  New York Times columnist and bestselling author, Frank Bruni. “The Beauty of Dusk: On Vision Lost and Found” is a wise and moving memoir about aging, affliction, and optimism after partially losing eyesight.

The first time I heard about Frank was listening to his interview  with the Hadley Institute for the Blind and Print Impaired. Then again  with Oprah as he was discussing this book. I knew, when the book was available in audio, I had to read  about his vision loss journey  .

Book Summary

Display of NLS Talking Book Player, Cartridges and Earbuds

The book Summary from Bookshare. One morning in late 2017, New York Times columnist Frank Bruni woke up with strangely blurred vision. He wondered at first if some goo or gunk had worked its way into his right eye. But this was no fleeting annoyance, no fixable inconvenience. Overnight, a rare stroke had cut off blood to one of his optic nerves, rendering him functionally blind in that eye—forever. And he soon learned from doctors that the same disorder could ravage his left eye, too. He could lose his sight altogether.

In The Beauty of Dusk, Bruni hauntingly recounts his adjustment to this daunting reality, a medical and spiritual odyssey that involved not only reappraising his own priorities but also reaching out to, and gathering wisdom from, longtime friends and new acquaintances who had navigated their own traumas and afflictions. The result is a poignant, probing, and ultimately uplifting examination of the limits that all of us inevitably encounter, the lenses through which we choose to evaluate them and the tools we have for perseverance.

Bruni’s world blurred in one sense, as he experienced his first real inklings that the day isn’t forever and that light inexorably fades but sharpened in another. Confronting unexpected hardship, he felt more blessed than ever before. There was vision lost. There was also vision found.

Initial diagnosis  and Advocacy

His story was very relatable, especially in the beginning. The first doctor was reluctant to give a proper diagnosis of his sudden vision loss. It was all maybes  and guessing which can send you down the rabbit hole of possibilities. He was referred to a specialist who gave the final diagnosis  of a stroke and no cure. I recalled some of the same experiences talking to multiple eye doctors. Taking numerous tests  and also  telling me there was no cure.

A Black male patient is sitting in a chair, facing his white doctor who is doing an exam/refraction with a phoropter.
Image courtesy of the National Eye Institute, National Institutes of Health

Frank stresses  the importance of being your own advocate when it comes to medical care. Doctors are busy and you are one of many patients. Be prepared to ask questions and do your own research. Also, bringing a friend or family member to appointments to help is useful as long as they understand their role and let you take the lead.

For example, Frank mentions not knowing about low vision services or opportunities for clinical trials. Or the doctor not asking questions about mental and emotional health. I can definitely relate. The same thing happened to me too. I had to find out about those resources from other people, and once Did, I chastise my eye doctor for not informing me. Fortunately, he took the constructive criticism well and promised to do better.

Why Not Me?

Frank poses the questions, “Why me?” Yet, there is a better question, “Why not me?” Why should any of us be spared struggle when it is a universal condition? Comfort and happiness are not automatic; we should expect some kind of difficulty to come into our lives. Having this mindset leaves us unprepared for pain and struggle. I have always been told just live long enough and pain and suffering will ultimately come into your life. I have also come to believe that perfect or even excellent health is not a guarantee until death. At some point  something on our bodies will break down.

Millions of Americans have some form of vision loss and that doesn’t include hearing loss or other bodily functions especially as we get older. Frank’s viewpoint is not that he overcame an obstacle but lives a condition. I appreciate this statement in the sense that being disabled is not something that I have overcome but what I live every day. It is a part of who and what I am. Yes, there are difficult moments but sometimes an ending is a new beginning. Sometimes a limit or a loss is a gateway to a new encounter. Skills you wouldn’t have acquired, insights you wouldn’t have gleaned come to live during this time.

Career as a Journalist

Frank talks about his career as a journalist  and his ability to write well. When he lost his vision  he made tons of errors in his writing. This of course  was devastating. But he began to focus on the ability and the gains. The fact he could still write in the first place. Editors who still wanted to work with him and readers who still wanted to read his work. I can identify. I too  am a writer  and lost vision immediately after receiving my journalism degree. I wondered what kind of career could I have as a blind writer? How would that work? I knew how to do the work as it was all in my head from my education  and training (I graduated with 7 journalism internships under my belt). The access to assistive technology  as allowed me to pursue this not only as a career but as a passion.

Growing Old and Being Disabled

Privileges and blessings were so much greater than what was loss. It was eye-opening in Frank’s perception of the world around him. How he saw other people with disabilities and  those who were elderly. These people were out here living their lives.

To grow old is to let things go. I see this more and more as I get older. But it first started when I went blind. My disability forced me to  release the reins. I had to shift my focus and prioritize  the things that really mattered. I pick and choose my battles because I want to live for another day. It takes energy  to pay attention and/or push the envelope on everything.

Frank points out we are a country that focuses on youth. As a result, we miss the greatness  of the accomplishments  that people make later in life. People are still doing phenomenal things in the later stages of life. With aging comes wisdom and maturity. You feel more comfortable in your own skin. What determines people’s happiness is not their physical conditions but what they pay attention to. When it comes to being disabled  you are not focused on that all day long. You are living your life, working, going to school, spending time with friends and family, etc. Frank finally muses  there is beauty in every stage of the day, from dawn to dust

Max Cleland Has the Heart of a Patriot While Surviving His War Wounds

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A man sitting in a wheelchair with one missing arm and missing legs. He is being fitted with a prosthetic arm by a medical technician.

Day Remembering Vietnam War Veterans

When I think of veterans November  comes immediately to mind because of Veteran’s Day. Or Memorial Day coming up soon in May. But I was surprised to see a national observation for veterans on my calendar. March 29 was National Vietnam War Veterans Day.

After I saw this commemoration pop up, it immediately made me think of two things. First was my father who  was a Vietnam War veteran. He was not a fan of this war and rarely spoke  about it. He passed away some years ago  and I wonder  his thoughts on such an observation. Second Max Cleland, a disabled Vietnam War veteran and Georgia politician. He died in Nov. 2021. His book, “Heart of a Patriot: How I Found the Courage to Survive Vietnam, Walter Reed and Karl Rove,” has been on my list to read. I thought there is no time like the present. This national day of observance  was the push I needed to read and review  his book.

Reading with My Ears Book Review

In the forward Cleland speaks directly to brothers and sisters of war. Those who are trapped in the memories. To those overwhelmed, coping on their own and struggling with what we have done and what has happened to us. To those left hopeless  and confused about our lives. He says, “It does not make us victims, it makes us veterans.”

Cleland was born and raised in Georgia. He lived  in the same town I reside in today. There is even a street named after him in the downtown district of the city. His father was in the navy during WW2 and he had other family members who served in the military. He was a  captain during the war. He   signed up for more time in the war because he felt he had to do his part.

War Injury and Rehabilitation

The day he was wounded by a grenade explosion was April 8, 1968. Eight days after President Johnson called for an end to the war. He came back from Vietnam missing three limbs (right arm and both legs)  and was treated at Walter Reed Army Medical Center. Doctors were not optimistic  about his future, but through the bonds he formed with other wounded soldiers, and through his own self-determination, he learned how to be mobile and overcome his despair.

As I read about his rehabilitation journey, I learned some new things about amputation such as the importance of knees. When he first tried to get artificial legs  there was resistance because he had no knees  and you need them to bend   for walking and climbing stairs. They are the key to balance  and mobility. During that time, they were made of wood and very heavy.

The doctors told him he would need crutches to use the wooden legs. But with one arm that would be nearly impossible. Yet, Cleland was determined to walk again and did everything required to do so. He did walk with those wooden legs until he was upgraded to plastic ones with knee support. Later on, the stress and exhaustion, especially  during the beginning of his political career,   caused him to go back to using a wheelchair.

He shares openly and honestly about his rehabilitation. For example, trying to get dressed using only one arm. He struggled with buttons on his shirt  and putting on pants. It made me think about a recent episode of The Shark Tank where a contestant pitched her business of accessible clothing for  people with disabilities, specifically amputees.

Disabled Black Man in Wheelchair Boarding Bus
Disabled African American Man In Wheelchair Boarding Bus

He shared about the differences in treatment between Walter Reed and the Veterans Hospital. He was released from Walter Reed and had to  continue at the VA Hospital. At that time, they were not prepared to deal with Vietnam veterans  as most patients were  from the Korean War or WW2. Additionally,  he says that 80% of patients were there for health problems unrelated to war  . As a result,  he felt lonely  because he couldn’t connect to the other men  as many of them were veterans from a different generation and also heavily medicated.

Reading his story, I could relate to the feeling of loss. Cleland talked about how  his feelings of safety, security  and sense of self were gone in a heartbeat. Although I didn’t become disabled because of war it did happen pretty quickly  and traumatically. My life was turned upside down.

Leads VA and PSD Revealed

Cleland  takes his artificial legs  and goes home to become the first Vietnam veteran to serve in the Georgia state senate. Next, President Jimmy Carter appoints him head of the Veterans Administration. He believed his mission was “to care for those who have born the battle.”

He recognized the lack of funding for veterans  yet always plenty for war. Nine million served in Vietnam,  from Aug. 4, 1964, to May 1975, with millions of them wounded and injured. There was a push to treat post-traumatic stress disorder (PSD) not just physical injuries. Living on hyper alert takes a toll, seeing death firsthand takes a toll, and killing takes a toll. In 1978VA psychiatrists finally admitted that PSD existed. and became an official psychiatric diagnosis. Meaning that veterans could get treatment and financial benefits. Years later he would benefit from this decision as he too delt with PSD.

At 40, he became Georgia’s youngest secretary of state. During his time in office, he appointed the first Black assistant secretary of state. He opened the process and registered 1 million voters. He was secretary of state for 12 years  but was not fulfilled politically.

It wasn’t until he became U.S. Senator. that he accomplished his dream. Battling a smear tactic  causing him to lose his seat and 9/11 by the invasion of Iraq, Cleland was pushed to the edge. Depression and PSD surfaced during this time. He was dealing with deep depression  and seeking  therapy and better medications. He went back to Walter Reed  for help.

Seeks Therapist and Help for Depression

At Walter Reed he was thrown back into Vietnam as he saw wounded veterans  coming back from the battlefield. He was deeply distressed and moved by what he was seeing  as the signs were so similar to what he had also experienced many years before.

A woman in a wheelchair along side another woman working with her on a computer

Despite all of that, he was able to get help for his depression and PSD. He found a great therapist  and medication that actually worked effectively. He learned how to reconcile  his past with his present. To remember who and what he was before he went to Vietnam and became disabled. Reclaiming that part of himself was a big part of his healing. He learned to find a new sense of himself at last.

I got quite emotional as I read Cleland’s memoir. I thought about all he went through. All  Vietnam veterans went through and probably still do. All my dad went through. Even in some ways how much things haven’t change since then. But also, how much  it has changed. I realize the goal is to keep going. To not forget the past but to look forward to the future.

Becoming a LinkedIn Rock Star: Chris Reed Shows Me How  

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I can’t believe it! The month of October is almost over and so is National Disability Employment Awareness Month. Well, actually for me disability employment is every month of the year. As a blind freelance writer and blogger, I am working all year long. I spend the majority of my writing on the disabled so this month is like many others. But don’t get me wrong I appreciate the national observation. The focus on how we disabled folks are working, want to work, can work and are still working is needed.

Audiobook on LinkedIn

Now, that being said I have to share about this great business audiobook I read   this month. It gave me tips to take my LinkedIn profile to the next level. As a blind person I have had a love hate relationship with LinkedIn. I love it for the ability to connect and engage professionally with people. Yet, I hate the layout of the

platform because I find it hard to navigate as a disabled person. Since LinkedIn is the top go to social media place for professional networking I soldier through and do the best I can. Finding and reading this book has helped me to do just that. So, are you ready for the name of the book? Want to know how it helped me? Have I left you in suspense? Probably not because my headline gave it away, right? The book is “How to Become a LinkedIn Rock Star” by Chris J Reed.

I stumbled on it while searching on my Hoopla app. And boy what a Jem of a find it has been! Let me share the things Reed showed me on how to become a LinkedIn Rock Star. The first thing he wanted to make clear is what LinkedIn is and isn’t. LinkedIn is the most underutilized social media platform compared to Facebook, Twitter, YouTube, Instagram, Tick Tock and etc. People wrongly assume that LinkedIn is just for job seekers only. This is not true because it provides a rich opportunity to make professional connections. As a result of this myth people assume they don’t have to develop and manage their profile as long as it’s there and the job info is accurate. But when someone searches for you online your LinkedIn profile comes up first the majority of the time. This is true because I checked mine and next to my personal website my LinkedIn profile did come up first in a Google search. Hence, if it is not updated, no active engagements and few connections, then you are missing important opportunities and don’t even know it.

LinkedIn is More Than a Profile

So, how do I work this knowledge to my advantage? Reed told me to be sure my summary, about   and experience sections are written in first person. He compared Your LinkedIn profile to a in person networking function. If I were at a business mixer, I would talk to people in first person. I would use casual voice while being professional. I would share about my business, myself and how I could help the person I’m talking to. I found this way of thinking about LinkedIn immensely helpful because I had been approaching my profile as an online resume instead. I now realize that is not the same thing and I need to update my profile and make some changes.

My Personal Brand

Reed spent several chapters stressing the power and importance of your personal brand. He is widely known as the CEO with the mohawk. It is a part of his personal brand and makes him stand out over others. Reed says his Mohawk is the best icebreaker and he loves it because it starts the conversation and then we can get down to business.

Therefore, the question becomes what is my personal brand? What makes me unique? What am I an expert in? What makes me shine and stand out? Next is being sure the answer is clearly communicated on LinkedIn. Because Reed continuously stated throughout the book your LinkedIn profile is seen all the time. Additionally, having a compelling personal brand makes an impression, communicates confidence, helps with referrals and recommendations.

Cold Calling is Dead

After establishing my personal brand, it is time to set up social selling. It is the process of developing one-on-one relationships using social media. It is a soft sell. LinkedIn has the ability to give a broad reach and name drop without doing so. It is a digital networking platform and great for introverts like me. Reed says social selling unlike cold calling allows you to build relationships over time. This is the new way because cold calling is dead. People don’t pick up the phone when the number is unknown. When Reed talked about this I totally agreed. I screen my phone calls all the time. I truly dislike robocalls and don’t pick up the phone if I don’t recognize the number. The same goes for unsolicited emails. I am quick to unsubscribe when companies add me to their marketing emails without my permission. Whereas as on LinkedIn, people’s business profile is right there. You can see their photo. Check job history. Look at the number of connections. See if they have shared connections. You are not going into it blind, no pun intended.

Empish Using a Landline Phone

With social selling, you share content valuable to people who are interested. As you share and engage, you will establish yourself as an authority and strengthen your personal brand. As I read about social selling I noticed that I do share content on LinkedIn, but I don’t return the favor. I need to engage more with my connections. Liking, commenting and sharing on their content not just posting my own. I also need to thank my connections when they like, share or comment on my posts. This too will boost my engagement and not make the interaction one sided.

Leader or Follower  

The chapter on the One to Nine to Ninety was interesting. Reed says that 1% creates and leads. These are the people who are consistently providing content, blogging and engaging with others. The next 9% are active responders. This group likes, shares and comments on content that is posted. Sadly, the majority are 90% and they do nothing. This group is called the silent viewers because they watch but don’t respond to what they see.

He encourages you to engage, just don’t watch. Be a leader, influencer and shine as the expert you are. However, each group of people has value and play a vital role. We need people to lead the way. People to engage. People to watch and be influenced by what they see. But the critical question is what group will I be in? What role will I play? Will I be a follower or a leader?

High Quality Connections

LinkedIn is not just about sharing content but connecting with people as I mentioned before. Reed spent time explaining the importance of first-, second- and third-degree connections. He also stressed the importance of high-quality connections. Looking at how many people they are connected to because if their numbers are small that will limit your engagement. Also, looking at if they are active on LinkedIn. Do they share content, post blogs, comment, like or engage with others? Knowing this will impact your interaction with them as well. If they are active then their second- and third-degree connections will be familiar with them and more likely to be active too.

Whenever I have gotten a LinkedIn invite I would look at the profile first before accepting. I would look at current and past jobs. See if we had shared connections. See how many connections they had. But that was about it. I never really focused on the person’s engagement and activity on LinkedIn. I didn’t pay attention to second- and third-degree connections. Reading this book shows me I need to go deeper.

Conclusion

There was so much more in this audiobook, Comparisons with Facebook. Personal brans of the Joker and Godfather. How sales Navigator works. But I will stop here. I need to start improving my LinkedIn profile and engagement. You need to get and read the book. Reed is a pretty well-known man on LinkedIn and has thousands of connections. So, I trust his advice in helping me to become a LinkedIn rock star.

Why I Loved the Story of a Blind Adulterous and His Deceitful Wife

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Reading with My Ears Book Review

How long can a husband who is going blind keep that fact from his wife? Can a Sighted Spouse Deceive Their Blind Partner Based on Vision Alone? Is it possible to commit adultery with a woman who is also your legal wife? What happens when the two meet and the truth is revealed? The book “Lady Folbroke’s Delicious Deception” by Christine Merrill addresses these questions and so much more.

Here is the overview by Barnes and Noble: Emily married the love of her life and hoped that he would learn to love her. Instead, he upped and left their country estate for London. Suffering the snub with dignity, three years on Emily has had enough! Confronting her errant husband, Emily sees that Adrian, Earl of Folbroke, has been robbed of his sight and doesn’t know her at all! Emily longs for her husband’s touch. If she plays his mistress by delicious deception, can he finally learn to love his wife?

Loved the Blind Main Character

Okay, you got the gist of this romance novel. Now, let me tell you why I absolutely loved reading it. And I am going to try really, really hard without giving away any spoilers because I want you to read and enjoy it too. So, here goes. The overall reason I loved the book was because of the blind antagonist, Adrian. I have read a lot of books over the years and rarely do I find a blind main character, especially one that is like a regular human being. Let me explain what I am talking about. Many times, people who are blind are portrayed in stereotypical ways. We are the super crip accomplishing huge feats that even sighted folks can’t do. Or we are like little angels that don’t sin or do anything bad. Or we are like Casper the Friendly Ghost hovering in the background like window dressing but have no real purpose or importance. Or we are asexual and either we don’t have/want sex or are not seen as sexually attractive. Are you getting my meaning now? I sure hope so because I am out of examples.

Struggles with Going Blind

So back to Adrian, the wayward husband. He abandons his wife and moves to the city. Why does he do this? Because he is going blind and can’t face the music. This is very realistic and true. Our society puts so much shame on becoming disabled. Many of us who go blind as adults have a real tough time dealing with it and then society, friends and family might not react well to the news. There is fear, shame   and anger when you are going blind. This story was way back in the day and it wasn’t like he had a support group, therapist or someone to call who understood what he was dealing with. So, he ran away.

Then the next thing he did, which a lot of us in the blind community do, is Fake it ‘til you make it. Adrian acted like a drunken fool and spent time around unseemly people as a way to deal with his situation. He pretended he could see when he couldn’t. He avoided his true social connections, family and of course his wife because they would see right through his charade. He acted this way because he was depressed and saw no future.

Process Blindness in a Positive Way

But in other ways he was processing his blindness in a positive way. He had started to use a stick (official white canes would not be developed until much later) to travel and get around. He got directions and remembered how to get to places he had been to before his vision decreased. He was also learning how to use his other senses. Merrill gave several good examples of this with his smell and hearing. Even his sense of touch was explored with touching clothing and body parts. This is a romance novel after all! You got to have some sexy love scenes and they were displayed in vivid description.

He was also figuring out his food plate which is a huge deal for us blind folks. Certain foods I don’t eat in public, like spaghetti with tomato sauce. Just a bit too messy! He wrote letters with a special writing guide. I have one similar and used quite often in my early days of vision loss.

I appreciated Merrill’s focus on Adrian’s resistance to connecting to the blind school yet wanting to help blind people. I totally understood this concept. During that time, the school for the blind only focused on vocational training whereas Adrian was an educated man. He had also been in the military and was a lord. This school wouldn’t have worked for someone on his level. yet, when he came across a blind woman who was begging on the street he offered to help her beyond just giving money.

Wife Decieves Blind Husband

Adrian is my blind hero and why I love this book. But his wife, Emily was interesting too. Once she discovers he can’t see and doesn’t recognize her she plans to deceive him. On the surface this seems cruel. But remember he left her in the dust for 3 years and has been committing adultery. So, girlfriend is doing a little payback! Deep down she loves him and wants to help him regardless of his vision problem. Lots of times when a person becomes disabled the marriage can fail because adjusting is difficult. Many times, the disability reveals problems and issues that were already there and hadn’t been delt with in the marriage. Such as the case in this story.

This novel of love and romance is a real yet sweet one. It was published in 2011 so I am sure it is available everywhere. I found it at my local library as an audiobook and listened to it on my Hoopla app. For my blind and visually impaired friends, it is available through the National Library Service for the Blind and Print Disabled. If you are looking for a story with complicated characters that are not one dimensional with some drama going on along with hot steamy  romance, this book is for you.

My Musings on Being Heumann

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The ADA and Disability Activism

Today in the disability community, we recognize the signing of the Americans with Disabilities Act (ADA). In honor of this landmark civil rights legislation, I read an audiobook “Being Heumann: An Unrepented Memoir of a Disability Rights Activist” by Judy Heumann. She is a disability advocate and her actions played a vital role in the passing of this law. You might have heard of her more recently as she was featured in the 2021 Oscar nominated documentary Crip Camp that aired on Netflix. However, Judy is known much more than her role in a film. Penguin Random House summarized her story best, “One of the most influential disability rights activists in US history tells her personal story of fighting for the right to receive an education, have a job and just be human. A story of fighting to belong in a world that wasn’t built for all of us and of one woman’s activism—from the streets of Brooklyn and San Francisco to inside the halls of Washington—Being Heumann recounts Judy Heumann’s lifelong battle to achieve respect, acceptance and inclusion in society.”

Being Heumann Overview

Judy starts her story at infancy where she describes being paralyzed from polio at eighteen months and how her struggles for equality began early. She was labeled as a “fire hazard “because of her wheelchair as she fought to attend grade school. Her battles with the school system continued when she won a lawsuit against the New York City school system for denying her a teacher’s license because of her paralysis, where her actions set an example that ultimately improved rights for disabled people.

She continued to be a role model of activism and self-determination when she rolled her wheelchair through the doors of the US Department of Health, Education, and Welfare in San Francisco as a prominent leader of the Section 504 Sit-In. It was the longest takeover of a governmental building in US history. Judy and a community of over 150 disabled activists and allies were able to successfully pressure the Carter administration to implement protections for disabled people’s rights, igniting a national movement and leading to the creation of the ADA.

Different Backgrounds but Many parallels

I left encouraged after reading this book about Judy’s life. Although I didn’t become disabled as a child, am not Jewish or from the north and our disabilities are different, I did see parallels. I have worked several years at an independent living center. I have dealt with the struggles for inclusion and acceptance. I have felt shame or confusion when someone calls out my disability or ask intrusive questions. I have had struggles with accessing the basic things I need to live and work.

Fine Line of inclusion and Exclusion

I understood her point about walking that fine line of inclusion and exclusion. Judy shared an example of this when at church her mother didn’t want the pastor to carry her up the stairs to participate in the activities with the other children. Her mother thought it was too much and it would be a burden even though the pastor was okay with it. I could relate with this situation so strongly. It is part of the stress of my disabled life and not wanting to be a burden. It is about picking and choosing your battles. It is about not wanting to wear out your welcome. If I ask to many times, people will get tired and annoyed so I pull back and either don’t ask much or don’t ask at all, neglecting my needs in the process. It is also being in that vulnerable and precarious position of depending on people to be nice. If a person is nice about it then I feel okay to ask and move forward; if I sense some resistance then I pull back and don’t ask.

Focus on the Barrier Not the Disabled

A woman in a wheelchair along side another woman working with her on a computer
https://www.pexels.com/photo/woman-in-red-sweater-wearing-black-framed-eyeglasses-sitting-on-wheelchair-4063789/

One of the things I have learned about being a disability advocate and Judy also brings up in her book is the mindset we must have for the world to change. When she was pushing for Section 504 she and other activists had to help people understand it is not because you can’t walk that you can’t get into the building rather the building is not accessible. Changing the mindset and putting it on the barrier and not on the disabled person is the way of creating the change. For example, I wrote in a post about applying for jobs online and inaccessible sites. The answer is not for me to regain my sight or get a sighted person to help but to fix or create accessible websites that work with my screen reader.Feelings of Being Ignored

Judy said when people ignore you, it is an intentional display of power. They act like you don’t exist and do it because they can. They believe that nothing will happen to them Ignoring people silences them. It avoids resolution or compromise. It opens feelings of unworthiness because it makes you feel that you deserve this treatment in the first place. In the end you are forced to choose whether to make a fuss or accept the silent treatment. If you stand up for yourself then you are viewed as aggressive because you break the norms of being nice and polite, which can make you feel worse.

OMG! When Judy said this, I was thunderstruck! What she said was so true and powerful. So many times, I have felt a loss of power as a Black disabled woman when I have been ignored by someone who didn’t want to deal with me. There would be times when I just didn’t have the energy or the resources to fight back. There have been times when I would regroup and try another approach but in the end being ignored really sucked! I would have to figure out other ways to reclaim my power and self-confidence.

It’s About Human Rights

Judy noted people need to understand that Section 504 and the ADA was about civil and human rights for the disabled. Many people understand the fight for racial equality, or gender equality but when it comes to disability people don’t connect the dots. Many times, I have had to say substitute one of the other minority groups and replace with the word disability.  Then people began to understand the struggle for equality. Judy said the basic logic in society is that people with disabilities won’t benefit as much from X, or Y or Z as much as people without disabilities. Therefore, X or Y or Z is not essential. They should accept the idea of going without. The same goes for transportation and employment. But what kind of logic is that really? The underlined assumption is that people with disabilities have less potential to learn and contribute. That we are less capable and not equal.  Judy says the problem with this logic is that disability is part of the human condition. As we live longer more people will become disabled. What we should do is accept it, plan for it and build our society around it. Disability is coming whether we want it to or not. I totally agree and tell my temporary abled body friends this all the time.

I will end this blog on this profound point Judy made. We underappreciate our human rights in America. You won’t realize their importance until they are gone. These are such powerful words. Therefore, we must be constantly vigilant because our rights are precious. We can lose them. They can be taken away at any time.

The Disability Visibility Anthology Delivers Insightful Storytelling

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Disability Visibility Book Cover

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.

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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.