February is known as the month for romantic love. We wear the color red and give special things to our sweetheart. But who’s to say we can’t fall in love with our public library too.
National Library Lovers Month
February is also National Library Lovers Month where the focus is on reading and the institutions that provide books. It is a time to honor and recognize the important role that libraries play in the community. For my reading enjoyment, there are two go-to libraries I personally use. The National Library Service for the Blind and Print Disabled and Bookshare.
But there is also a third option. I use my public library right in my neighborhood. Although I am blind, this library is inclusive and available for everyone. Here’s 7 reasons why.
Books in Alternative Format
1. Local public libraries supply books in audio format and large print. Their collection might be limited but it is available. I have checked out books on CD many times from my public library and members of my book club have gotten the large print version. Also, books are available in electronic format in audio and ePub on smartphone apps. My favorite one is Hoopla. It is fairly accessible with Voiceover on my iPhone. I can check out a certain number of books, magazines, movies and music per month via my public library card. Plus I can get them through instant download so there is no wait time. WooHoo!
Low Vision Aides and Devices
2. Some public libraries offer low vision aids and devices. Hand-held magnifiers, CC-TVs and magnifying screen overlays can be found to assist with reading printed materials while at the library. If you are low vision ask about these devices at the circulation desk.
Stay Connected to Community
3. The public library helps me stay connected to my community. Sometimes being visually impaired is isolating and struggling to connect is hard. Many times, I have attended events like county/city meetings, forums and town halls. At these events I have not only kept up with current happenings but made connections and bult relationships with people in my community.
Voting
4. Many public libraries are voting precincts use for early voting and special elections. I have voted several times at my local public library. I have found it easier, faster and more convenient to vote there than the precinct on my voter’s registration card. Contact your voter’s registration office for more details on this option.
As a side note. A couple of years ago my public library conducted a demonstration of the new paper ballot machines when they were rolling out in my state. I attended and learned how to vote with the new machines and was ready to go when the next election came up.
Classes and Events
Empish and the Author, Noel Holston at Library Book Signing
5. Public libraries host special classes and events. At my library I have attended so many special community events. For example, I went to an arts and crafts class where I learned how to make homemade sugar scrub. There have also been classes like yoga, personal finance, home ownership, and even movie nights. Over the past several years I have attended numerous author lecture discussions where the author will do a reading and Q&A afterward. I especially love these author events because I get to engage with the author, learn about their latest book and get it signed. Book festivals are another library special event. These events bring out tons of book lovers and enthusiast. You get to hear lots of authors share about their books, get them signed and interact with others like yourself.
Book Discussions
6. Public libraries host monthly book discussions. Besides reading books, I love attending book discussions. I attend two at my public library. We meet monthly via Zoom because of the pandemic. But before COVID we met in person, one met at the library and the other met at a local restaurant for dinner and discussion.
Passes to Cultural Activities
7. Some libraries offer free passes to the zoo, parks and museums. These passes are typically first come first serve. Just ask the librarian at the circulation desk for more details.
Braille Literacy Month is almost over and I am sharing another post on the topic. Most people think if a person is blind, which includes low vision and total blindness, they must know and read braille. For those that think this, I am about to burst your bubble because not all blind people read braille.
Some might ask if braille is a useful tool for reading and writing why don’t all blind people use it? If it opens up literacy, employment and independence what is the problem? Well, there are several reasons why a blind person might not access this tool. But before I give those reasons let me clarify one point.
Decrease in Braille Reading Overall
Braille reading is decreasing overall because of advancements in technology. Devices like smartphones, audiobooks, and screen readers allow blind people to access information electronically verses reading printed braille. However, there are electronic braille devices like note takers and refreshable braille displays but a knowledge of braille is still required for their usage.
5 Reasons Blind People Don’t Read Braille
1. Braille is harder to learn later in life. There is a saying you can’t teach old dogs new tricks, and there is a nugget of truth in that statement. Learning braille is much like learning to read when you were a kid. You learned alphabets and numbers. then move to words and phrases. Lastly sentences and paragraphs. Although you were young and could learn quickly, it still took work, time and tons of practice. Braille is no different. So, some older adults find it hard because of the work and practice it takes to be proficient.
2. Medical reasons make it hard to read braille. IF a person has diabetic retinopathy, stroke side affects or other issues with their fingers and hands braille is hard to learn and read. It takes a light touch to read the dot formations. Even though the dots are raised they are small and a sensitive finger is needed to read properly.
3. There are social stigmas and stereotypes about blindness. Much like using a white cane, reading braille is one of them. If a person is seen reading braille the assumption is they are blind. Some people don’t want to have that label or disclose their visual disability in such a public way. So, they won’t access it.
4. Regardless of social perceptions, reading braille is a personal acceptance of having a disability. If a blind person has a negative attitude or is in denial about their disability, braille will be the last thing on their mind. Braille has such a strong association with blindness. Only after embracement will they be more open minded.
5. IF a person has some eyesight they might not read braille. Some who are low vision and can read with large print or magnification might not learn braille. The idea is they have enough vision to do without it. But if they are increasing the magnification to the point only a few words are on the screen or in the book, reading becomes unenjoyable, laborious and difficult. Also, reading comprehension skills suffer. But because they are not totally blind there is little encouragement to learn braille.
My Own Braille Journey
I have been a part of the blind community for about 25 years and spent 10 of them working at a vision rehabilitation center. From my own personal journey with braille and work experience these 5 reasons are my observations and answer to the question why blind people don’t read braille.
A black and white braille label gun with turn dial displaying both braille and print letters and numbers.
I am not a strong proficient braille reader. I made several attempts over the years but was not successful. I have enough braille knowledge to do the things that I need to for my life. That being proficient in alphabetic Braille is enough for now. I realize that reading books and magazines is a great thing to want to achieve but in all honesty my life is busy and I don’t have the time. I have learned to be okay with that.
Social Pressure to Read Braille
I also discovered that part of wanting to be a strong braille reader was because of social pressure. As a blind person you are supposed to be proficient in braille. That is what everyone expects and even sometimes demands. People are genuinely surprise when they hand me a book or document and I tell them I am not able to fully read it. There is this perception that braille automatically goes with blindness-no questions asked.
So whether you want to or not. Whether it makes sense or not. Whether you can or not. You do it or die trying! HaHa! That is what I was doing. I was trying hard to live up to this expectation that really did not fit who and what I am. I was not being authentic and true to myself.
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
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
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?
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.
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.
It’s the beginning of the year and Get Organized Month. What better way to start off on the right foot than to clean, declutter and organize. It is hard for new and exciting things to come into your life when there is a lot of extra stuff hanging around. I don’t necessarily mean physical things like your wardrobe , furniture or housewares. Rather it could be emotional baggage, electronic clutter on your computer or just plane old bad habits.
Display of NLS Talking Book Player, Cartridges and Earbuds
To help you move in the right direction, I found 6 books on getting organized. These are all in audio format and can be found at the National Library for the Blind and Print Impaired, Bookshare and Hoopla. They are my go-to sources for great audio reads. If you read print, I am sure these gems of wisdom are available at your local library or where books are sold. Select one or two and enjoy the journey of decluttering your home, workplace and life.
6 Audiobooks on Getting Organized
1. Make Space for Happiness : How to Stop Attracting Clutter and Start Magnetizing the Life You Want by Tracy McCubbin
It’s time to make room in your life for happiness to blossom. Do you feel like you have too much stuff? A cluttered space isn’t just inconvenient. The truth is it’s hard to lead a joyful, purposeful life when the things around you detract from your relationships, habits, and goals.
But decluttering is more than getting rid of the stuff you already have. To make real change in your home, you need to look at how these excess possessions got there in the first place. This book examines the acquisition cycles that keep our homes overcrowded and distract us from going after the meaningful things we really want in our lives.
2. Making Space Clutter Free : The Last Book on Decluttering You’ll Ever Need by Tracy McCubbin
Discover the freedom of a beautiful home, personal purpose, and joyful inner confidence Decluttering expert Tracy McCubbin offers revolutionary help to anyone who has repeatedly tried to break their clutter’s mysterious hold. Her powerful answer lies in the 7 Emotional Clutter Blocks, unconscious obstacles that stood between thousands of her clients. Once a Clutter Block is revealed—and healed—true transformation of home and life is possible.
3. Simple Organizing: 50 Ways to Clear the Clutter by Melissa Michaels
Getting organized can feel like an impossible task. But it doesn’t have to be complicated. The things you actually use need a designated home. The rest of the stuff is clutter and needs to be removed. Once you’ve determined which is which, order can easily be maintained.
4. Declutter Like a Mother : A Guilt-Free, No-Stress Way to Transform Your Home and Your Life by Allie
Casazza
The author shares her powerful and proven method for clearing the clutter in our minds by first clearing the clutter in our homes, the place where transformation begins. When Casazza first became a mom, she found herself struggling to make it through each day. She battled fatigue, depression, and the unsettling feeling that she didn’t have what it took to do “this mom thing” well. When she realized the root of her burden was the overwhelm of physical clutter, she got intentional about what took up her space and time.
5. Keep the Memories, Lose the Stuff : Declutter, Downsize and Move Forward with Your Life by Matt
Paxton
The author distills his fail proof approach to decluttering and downsizing. Your boxes of photos, family China and even the kids’ height charts are just stuff. They are attached to a lifetime of memories. Letting them go can be scary. With empathy, expertise, and humor, this book helps you sift through years of clutter, let go of what no longer serves you, and identify the items worth keeping so that you can focus on living in the present.
6. How to Keep House While Drowning : A Gentle Approach to Cleaning and Organizing by KC Davis
This revolutionary approach to cleaning and organizing helps free you from feeling ashamed or overwhelmed by a messy home. If you are struggling to stay on top of your to-do list, you probably have a good reason: anxiety, fatigue, depression, ADHD, or lack of support.
For therapist KC Davis, the birth of her second child triggered a stress-mess cycle. The more behind she felt, the less motivated she was to start. She didn’t fold a single piece of laundry for seven months. One life-changing realization restored her sanity and the functionality of her home. You don’t work for your home; your home works for you. In other words, messiness is not a moral failing. A new sense of calm washed over her as she let go of the shame based messaging.
Do you know One of the most common misperceptions about blind people? It is we are more vulnerable to attack than sighted people. This is a dangerous myth. First it implies we are an easy target. Second, it creates a false notion that if we were attacked we couldn’t protect ourselves
Class and Audiobook on Self Defense for the blind
Sept. 26 is National Situational Awareness Day. This holiday made me reflect on the time when I took the Safe without Sight self defense course at the Center for the Visually Impaired. I remember feeling some stress because of the idea of being attacked. Who wants to think about that? However, I realized the value because I needed to learn ways to protect myself now that I was blind.
I learned so much about self defense . Since that was some years ago, I refreshed my knowledge and recently read the audiobook from Bookshare, “Safe Without Sight: Crime Prevention And Self-Defense Strategies For People Who Are Blind” by Wendy David. The book was written back in the 90’s but still packed with excellent tips that I want to share. Hopefully after reading this post, you will be even more determined to protect yourself too.
Listen to Your Intuition
Intuition, common sense, gut reaction, funny feeling, small voice or even the Holy Spirit. We might all have different ways to describe that sensation you get when something is a bit off. All I can say is trust it whatever you call it because it will save your life.
Once I was in a support group and when I sat next to another member I quickly got a bad feeling. I was struggling to trust my gut reaction. I didn’t know the man and felt I was being judgmental. His actions toward me didn’t display anything harmful. So, instead of getting up like my intuition told me to do I stayed and sat next to him during the meeting.
A few weeks later all of us in the support group were told he was not returning. Apparently he had been touching women in appropriately and there had been several complaints. I was in shock and this news sobered me. I knew from now on to trust my gut and do what it said no matter the circumstances or how uncomfortable I became.
Why Don’t We Listen?
The million dollar question is why we don’t listen. We are trained to be nice to people. To not make waves or hurt people’s feelings. It is a standard Rule to disregard our own feelings over others. Also, we tell ourselves to be reasonable. We discount our own emotions even when things are glaringly obvious.
Pay Attention to Your Surroundings
Pay attention to your surroundings. In our highly distracted world, we are looking down at our phones while walking or driving. I remember when I was a young girl, my mother was teaching me how to ride public transportation. We were at the bus stop and this car kept circling by. She pointed this out to me and I hadn’t notice. She said always pay attention to what is going on around you.
I have never forgotten that lesson because now that I am blind it is even more relative. Today, as part of my awareness strategy, When traveling I ask questions. For example, what other businesses are in the area, what does the front of the building look like, are their stairs or is there a flat surface. Or when sitting in a room, I sit close to the door and know exactly where it is located. I do this in case of an emergency for a quick retreat.
Pay Attention to Body Language and Facial Features
I also Pay attention to my body language and facial features. I walk and move with purpose and assurance. I keep my head tilted upward and straight ahead. I will look confident even when I’m not. When interacting with people I speak clearly ,No mumbling or whispering.
Use Other Senses to Pay Attention
I use my other senses to pay attention and navigate the world. Sound, smell and touch all tell me what is happening. Someone’s tone of voice or the traffic flow at a crosswalk are pieces of valuable information. Interesting smells can tell you things about a person like their cologne, if they smoke cigarettes, or have bad body odor. Touching objects like walls, doors or furniture communicate location.
Spatial Awareness
Boundary setting is critical for good self defense. You must be clear, both verbally and physically, with your personal space. For us, blind folks, good spatial awareness is key. It means understanding where you are physically as it relates to other things such as people and objects. I use this skill daily to find furniture and turning hallway corners. Mastering this skill has kept me free from harm and danger.
Spatial awareness Also includes my feelings. The ability to feel if you are close to something or not. It is a little hard to explain but I can get a sensation when I am moving toward or away from something without actually seeing it. This skill is handy when people get too physically close to me.
Setting Verbal Boundaries
Setting verbal boundaries come up when people ask me personal questions. Two that raised a red flag are do you live alone, and how much vision do you have. This is a tricky thing to figure out sometimes. People are naturally curious and ask questions about my vision loss. This doesn’t mean they will harm me. Admittedly, I get tired of this but I try to be kind and gentle. I don’t always know the person’s intention when asking so I will proceed with caution. Sometimes I don’t answer at all.
Who is asking the question, what is my situation I am in? What is happening around me? Do I feel safe having this dialogue? Do I feel comfortable? I have learned it is okay to lie. This is my personal safety we are talking about and I don’t have to be honest. Or I will give a general answer especially in public settings. I realize other people are listening too causing me to be mindful of the conversation.
I practice this all the time at the doctor’s office. When I have to fill out medical documents I will request to do that in a private waiting room. Sometimes when I am asked to give my address I will hand the person at the counter my state ID instead of verbally giving it out.
Setting Physical Boundaries
I am particular about people in my personal space, especially if I don’t know you well. I have taken the initiative to shake hands instead of hugging. This lets the person know my boundaries. I will be verbal and extend my hand toward them. I communicate to not grab my arm. I have been forceful when necessary. Women are socialized to be quiet and not assertive. But this is my personal space and I have to speak up.
I know we can implement these self defense techniques regardless of vision. Still, they are chiefly important for people with vision loss and even other types of disabilities. Listening to your intuition, being aware of your surroundings and setting boundaries are the keys to good self defense. Are there other self defense strategies we can do? What tips do you have about protecting yourself?
When I was a little kid my dad took me to the library. It was part of our Saturday routine. We would pile in the car and drive to the local branch in our community. On the way he would share his childhood story about his inability to enter the main public library in his hometown due to segregation. He wanted me to understand the importance of accessing the library. And the key to that access was having a library card.
As I got older and moved from home, every city I lived in I had a library card . Even after I went blind I still kept a library card and frequently utilized my local branch. September is National Library Card Sign Up Month. Do you have a library card? Do you know the benefits of one? It’s not just for checking out books. The library has many other services and resources and here are the benefits.
1. Learn new job and computer skills.
Do you need help looking for a job? OR what about learning a new computer skill? Libraries offer broad electronic resources for students, small business owners, job seekers, hobbyists, and lifelong learners. Whether you’re looking for free software to pick up a new language, resume tutorials, or patent records for a new invention, the library has free access to awesome online databases and classes.
2. Help your kids do better in school
As I shared, my dad took me to the library on a regular basis. As a kid I had my own personal library card with my name on it. I was not only able to checkout books for pleasure but also for school. When I had to do research or term papers the library was the first place I went. Libraries expose children to reading at a very early age. Many libraries have children Storytime and other fun and age-appropriate activities.
3. Explore your family tree
I remember a few years back I was on a mission to learn more about my family. I had sent off for my DNA info through Ancestry.com and worked on building my online family tree account. As I did this exploration, I discovered that my local library had genealogy resources. I was able to take a family tree class for African Americans and access library digital databases. But none of that would have happened without my library card.
4. Check out passes for free admission to State Parks, museums and the zoo
These passes are typically first come first serve. Just ask the librarian at the circulation desk for more details.
5. Access books, eBooks, movies and music
Yes, of course, we all know in order to checkout a book you gotta have a library card. But did you know you can also checkout other materials like movies and music? I used to physically checkout music all the time. Now since I discovered the Hoopla app I do it from the comfort of my home. On this app you sign up with your library card and it gives you instant access to eBooks, films, audiobooks and music. Another library app is Overdrive/Libby but some materials, depending on demand, are not instant download.
More Persuasive arguments
If these 5 benefits didn’t move you to get a library card maybe this compelling point will stir you to action. According to the American Library Association, libraries are among our country’s most democratic institutions, promoting free and open access to information for everyone. Registering for a library card is one of the easiest ways to support this mission, since libraries use their sign-up stats to prove their value to local policymakers and advocate for much-needed funding. When you sign up for a library card, you’re helping demonstrate that today’s libraries are more important than ever.
And one of my most persuasive arguments is you are paying for it. So, why not fully access your library? Many community libraries are able to function and provide their services and resources because we are taxpayers.
If you don’t have a library card, hopefully my post has gently pushed you to do it. Reading and books are my jam. Can’t you tell? If you have a card already, share with me your benefits? Are they different than the ones I shared?
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.
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.
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 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.
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.
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
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.
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.
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.
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
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.
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
I’ve never been great at growing vegetation. Plants and flowers don’t seem to flourish around me. The idea of getting outside in the heat. Dealing with bugs of all kinds. Tilling soil and getting dirty. None of these are my thoughts of a fun and enjoyable activity. Then add my visual disability to the mix and my interest quickly wilts like leaves on an unwatered plant. Although there are blind gardeners they must have a passion I don’t possess. But what I have found fruitful is writing about the topic. Now, that is something I can do.
I have been reading a lot about spring and it has inspired me to write about the season as it relates to the writing craft. I can’t grow an actual green thumb but I can do it with words. Here is how I do it.
1. Start New Writing Habit
Spring is the time to rejuvenate. The time for rebirth. The time to try something new. With that in mind, start a new writing habit or ritual. I tried something new with writing this blog post. Before writing anything down or doing any research I wrote a list of keywords that communicated spring and growth. Words such as: nature, nurture, flourish, blooming, blossoming, petals, plants, leaves, stems, root, ground, dirt, soil and germinate. This writing exercise helped to get the creative juices flowing. It boosted my excitement about writing this piece. I felt energized . Also, it helped eliminate using the same standard, old words and phrases multiple times.
2. Writing in a Different Genre
Another new habit worth trying is writing in a different genre. If you are a nonfiction writer try fiction. If you are an author enter a writing contest or pen an article for a newspaper or magazine. Just like growing the same crop every time the soil will lose nourishment, your writing can go stale. Your creativity can suffer. I have tried a new writing assignment. A submission I wrote was recently published in my local library’s anthology. it has motivated me to continue in this direction and I am working on another anthology submission for Black female writers.
3. Interact in Person
Spring is also the time to come out of the winter cave. During those cold months we stay at home and hibernate. Plus, the pandemic has made many of us hesitant to physically interact with each other. But this is the prime time to get out of the house. Slow down those numerous Zoom calls. Renew old friendships and meet new people. Whether it is a writing group, book club meeting, or just hanging out, these interactions boost positive energy perfect for growing creativity.
I am an introvert but love interaction. This spring I started attending live theatre again. I went to my first production last month and it was a wonderful experience. I will share more in a future post. Later this month, I will be meeting with my dinner book club in person for the first time since the pandemic started.
4. Write Down Ideas and Thoughts
Now, for the real dirty work. You must plant seeds in order for your writing green thumb to grow. Just like in a real garden, seeds must be sown in order for flowers, fruits or veggies to materialize. Something I do regularly is write down blogging ideas whether they turn into a published piece or not. This boosts my creativity and gets those little writing shoots growing. When you write a list of ideas you can refer back and it keeps your creative brain fertilize. You are giving your thoughts and ideas a safe place to grow and germinate.
The seeding stage is the most important of phases of a plant’s growth and can’t be rushed. In other words, you can’t speed up creativity. it has to sprout over time, and with water, sunlight and nurturing creative ideas will soon emerge through the soil.
5. Remember the Writing Process
Seeds are resilient to weather changes, fighting their way through the ground. You will see little spurts of green sprouts inching their way up. As a writer it is easy to focus on the victories and successes of our craft. The published article, blog or even book, without properly acknowledging the hard work it took to get there. There is real time and struggle in accomplishing any objective or success story. Remember the experience and don’t forget the writing process as you work toward your goals. Enjoy the journey not just the fruits of your labor.
6. Stop Writing If Burned Out
Are your writing seedlings not growing? Don’t see any shoots sprouting up? Experiencing creative burnout? Yes, I can relate. If you are Stuck on the next section of a story, unclear on a headline, struggling with a character. Then stop. Do something totally different than writing. Do something you enjoy but doesn’t require a lot of mental gymnastics. This gives your brain a break allowing creative ideas to blossom. For me exercise is my thing. Turning up the music loud and walking on my treadmill not only is good exercise but I can relax and enjoy the moment. usually by the time I am done I can get back to writing. Other times, I will sit on the piece and sleep on it. Then come back the next day and continue to write.
Spring is here and full of writing possibilities. Use my ideas to inspire and refresh your work. I am sure that one, two or maybe even all of them will help you grow that writing green thumb.
Empish J. Thomas 