Category Archives: Daily Living

The Disability Visibility Anthology Delivers Insightful Storytelling

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.

Wall of Book Shelves

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.

My Favorite Podcast App Inducted into the AppleVIS iOS Hall of Fame

Empish using iPhone

Besides reading audio books and watching audio described movies I absolutely love listening to a good podcast. I got into them several years ago as a way to access news and entertainment on my long commutes to work. Now that I work from home delving into a rich podcast daily is still on my agenda. My   interest is vast. I listen to podcasts on news, technology, health and fitness, history; and arts and culture.

Overcast Inducted Into Hall of Fame

In order to really listen to all these great episodes, I needed a great app. One that is fully accessible and easy to use with a simple design. The one that fits the bill for me has been Overcast hands down. AppleVIS thought the same when they inducted them into their iOS Hall of Fame recently. AppleVIS created the iOS Hall of Fame in 2011 as an acknowledgement of the hard work that app developers put into making their apps fully accessible to Voiceover users.

Overcast Features

Overcast has some excellent features and benefits. Many of them I use often which AppleVIS highlighted on their site:

1.  Subscribe to a podcast, or just add an episode: try new shows without committing. I really like this feature because new podcasts come out all the time it seems. I can listen to an episode and determine if it is worth my wild or not without a full subscription.

2.  Search and browse for new podcasts, plus get personalized recommendations. Searching is easy breezy on Overcast. I can just dictate the name of the show and if it is available it will pop up in the results. Additionally, Overcast will let me know if shows are active or not which I really like. That way I know if I should subscribe or not.

3.  Voice Boost makes every podcast the same volume with a broadcast-quality remastering engine. Since I listen to so many podcasts each one is produced a little differently and the audio quality can be different as well. But this feature smooths things out a bit so there are not huge variations in sound quality.

4.  Download podcasts for playing anytime, even offline. Since the pandemic I have notice the WIFI in my area to be spotty at times. But I can still access my podcast regardless.

Additional Features

Other features I don’t use much but AppleVIS spotlighted are:

1.  Smart Speed saves time without distorting the audio or sounding unnatural.

2.  Create custom Playlists with smart filters and per-podcast priorities, and rearrange the list whenever you want.

3.  Receive optional notifications when new episodes arrive.

4.  Sleep timer automatically stops playback after any time interval you set.

5.  Apple Watch app with standalone playback and cellular streaming.

6.  CarPlay support.

Uncomplicated and Fully Accessible

AS long as podcasts are around, and I don’t see them going anywhere for a long time, Overcast will be my app of choice. I find it so simple to use and uncomplicated. When I am listening to a podcast, I don’t want to spend a lot of time figuring things out. I want to spend more time listening to the podcast itself than maneuvering around the app. I also appreciate their commitment to full accessibility to the blind community. Too many times I have downloaded apps from the App Store only to find they are partly accessible, like my bank app, or not accessible at all. I am left struggling and not sure how to proceed forward with what I need to do. Sometimes reaching out to the developer has been fruitful but sometimes it has not. So, thanks Overcast for creating an app that I can independently use. Your induction in the AppleVIS iOS Hall of Fame is well deserved.

Blindness and Sleeplessness. Do They Cause My Migraines?

Migraines and Going Blind

The first time I had a migraine was also the first sign that something was wrong with my eyes. It was back in the mid-90s and my head was hurting like someone was banging it with a hammer. The slightest movement would send throbbing pain through my head. These headaches would come and go with no warning. When they did, I would go and lay in the bed being perfectly still, turn off all the lights and place a cold washcloth over my face and just ride it out. Regular over the counter meds didn’t help much. Before that time, I rarely dealt with headaches except if dealing with typical stress, tiredness or hunger. I would hear people talk about migraines but I barely understood what they were dealing with. I was clueless about their pain. It wasn’t until I started to go blind that I fully got it. That I understood the ramifications of a migraine. Once I got into a doctor to see what was happening with my eyes the migraines decreased and then totally disappeared.

Migraines and Sleeping Disorder

Empish Yawning

Fast ford several years later and I was diagnosed with non-24 sleep wake disorder also connected to my blindness. This disorder causes my sleep clock to be off track. I take meds to help but it is not a cure and you can read the details in a previous post here on Triple E. As the years progressed, I would wake up around 3 a.m. with a mind-blowing headache that was out of this world. I began to flashback to when I first went blind and thinking how similar the headaches    were except, they only came in the early morning. It was happening often and I started taking OTC meds frequently. After taking the meds my head no longer hurt but I would be physically exhausted like I had been in the boxing ring with a heavy weight champion and got the living crap beaten out of me! Sometimes I would be too tired to get up for work; calling out for a sick day. I was grateful that I had an understanding employer and not a too hectic work schedule. Since this was in the early hours of the morning the migraines disrupted my sleep making it hard to go back to sleep or if I did the alarm was ringing as soon as I got a good rhythm going. Needless to say, I was miserable but putting up with it. It wasn’t until a guy I was dating at the time pushed me to seek medical attention. So, I finally went in to see a neurologist and was diagnosed with migraines. The doctor took my blindness and sleeping disorder into consideration but was not able to give a clear reason for the migraines. I was put on a prescription and noticed a decrease in the number of times I had a full-blown migraine in the morning. Things changed for the better and what I realized is that I needed to do more self-care.

National Migraine and Headache Awareness Month

This month is National Migraine & Headache Awareness Month. The theme is “A New Era of Care,” reflecting the wave of innovation in treatments and approaches to managing headache and migraine disease. CHAMP, the Coalition for Headache and Migraine Patients created this awareness month and is comprised of organizations sending a unified message about headache and migraine diseases. Every June they dedicate the month to spreading awareness and education through various campaigns and initiatives.

World Migraine Summit

I got into a steady routine with my migraine meds and doctor appointments. Things moved along okay until this year. In March I attended the World Migraine Summit remotely and learned so much. It was a free 9-day event and addressed various aspects of how migraines impact your life. I learned about migraines and race. Migraines and gender. Migraines and food/nutrition. Migraines and exercise. Migraines and medical treatment. Migraines and sleep. The list goes on and on. I walked away understanding that I needed to take it up a notch with my self-care. I had gotten lax because I had stop writing in my headache journal and was taking OTC meds with my prescription. I realized that I needed to take the bull by the horns and get more assertive with the care of my migraines. So, I made four major changes.

Four Life Changes

1.  I purchased an Ice Beanie and Migraine Cold Pack, which I learned about from my favorite Friday night show-The Shar Tank. This little soft cap has slots for ice packs and you wear it on your head to help with migraines. I know it might sound strange or a bit silly. But it actually works! Cross my heart, it really does.

Empish Sleeping

2.  Since my migraines come during my sleep, I made changes in my sleep routine. I have always known that a cooler room temperature helps in sleeping. My thermostat was already turned down low, but I purchase two cooling pillows. I also changed my sleeping attire to cotton tank tops and pajama shorts. I get hot at night and I knew if I could stay cool while sleeping that would not only help me sleep better but help reduce my migraines.

3.  I changed my diet. I have been slowly moving to a plant-based approach. So, eating more veggies, fruits, and even tofu is a part of my meals now. Drinking more homemade protein shakes for needed protein. I have also switched to taking liquid multi vitamins for better absorption and digestion.

4.  The last new change I am making is to see a new neurologist. Not that my current doctor is bad, but I need to shake things up a bit and get some new eyes on my chart. Sometimes it is good to get a new prospective when you have been dealing with something for a long time. Things change and there are new developments. So, I want to see what is out there and explore my options.

Implementing these changes have already produced positive results. I barely take OTC drugs anymore yet still take my prescription med regularly. Although I still wake up at 3 a.m.  I seldom have a headache. I am cautiously optimistic because I don’t know if my blindness or sleeping disorder is the cause of my migraines. I don’t know how long these positive changes will last. I don’t know if making more changes or seeing a new doctor will give me the answer. But one thing I do know is that taking better care of myself will help me to be healthier and happier.

Going Meatless with Tofu Taco Night

Empish at gas stove

I love tacos! Chicken tacos. Shrimp tacos. Ground turkey tacos. Fish tacos. Hard shell tacos. Soft shell tacos. Even tacos with just rice, beans and cheese. Or better yet a taco salad. Now, you get the point on how much I love tacos. I decided recently to start adding more plant-based foods in my life and that includes tofu. So, could I make tofu tacos?

Tofu Comes in Crumbles

Well, I was up for the adventure and decided that I could do it. I called upon my vegetarian friends, did some online research, went grocery shopping and got to cooking. I discovered that tofu comes in various options and I am still learning the myriad ways I can purchase it. But for my tacos the best was in crumbles. I found them in the frozen health food section at the grocery store. To my confusion but delight I found a variety of tofu crumbles already seasoned. Since I was not initially aware they came this way, I wasn’t prepared and didn’t understand my options but the store clerk told me   that one package had a picture of, you guessed it, A taco! Bingo, sold! That is the one I wanted.

Cooking Tofu

Next, I called up my vegetarian friend to figure out how to cook my new treasure. She said cook it just like you would ground beef, chicken or turkey. Well, that was easy breezy! I knew how to do that. I also asked about adding taco seasoning. I usually grab a packet of seasoning found next to the shells in the store adding it to my meat. She said to taste first and see how you like it. If you add the taco seasoning maybe just half the packet. Well, I kind of followed her advice but kind of didn’t. I got a little too happy and ended up using the whole seasoning packet. This made my crumbles too salty. But once I added my toppings of lettuce, salsa, tomatoes, shredded cheese and pickled jalapeño peppers I could barely taste the salt. I mostly used hard shells for my tofu tacos, warming them up in the oven on my specialized taco rack, but I tried one or two soft shells too. I served them up with a side of Mexican-flavored rice and black beans.

Perfecting Tacos and Trying Other Dishes

Ah, yes! As I sat eating my delicious meal, I was feeling pretty proud of myself for taking on this new challenge. I realized it was easier than I imagined and I was emboldened to take it higher the next time. I also realize that part of my no salt spice collection was one that would be perfect for tacos. It’s called Mexican Aromatics and instead of using taco seasoning I am going to use that instead. I think once I perfect this tofu dish, I am going to expand my palate and try tofu in other ways. I am excited about the possibilities.

Three Inventions for the Blind that Changed My Life

National Inventors Month

Empish Writing a Check

After I went blind some 20 years ago, I needed tools to adjust to my new life. I knew that as a blind person I wasn’t going to be very successful without some kind of accommodation or modification to the way I was living and moving in the world. May is National Inventors Month and I am very appreciative of the things that were created to not only help me regain independence but have a fuller and richer life. For example, I love my white cane for traveling. My metal guides for signing documents and writing checks. My talking and braille watches and clocks for time management. However, the three inventions that changed my life the most are talking books, screen readers and braille. I use these tools daily and wouldn’t know how to function without them.

Invention of the Talking Book

Thomas Edison originally wanted his Phonograph to be a talking book device for the blind. So, in 1877, he applied for a patent. One of the ten potential uses he listed was “phonograph books, which will speak to blind people without effort on their part.” Interestingly, this item was second in his list of ten; “reproduction of music” was fourth. It would take over 50 years before the Phonograph could be used for   talking books. This was due to technology and economic challenges. In 1931, the American Foundation for the Blind (AFB) and Library of Congress Books for the Adult Blind Project established the “Talking Books Program” (Books for the Blind), which was intended to provide reading material for veterans injured during World War I and other visually impaired adults. Later, Learning Ally and the American Printing House for the Blind also produced talking books. The first test recordings, in 1932 included a chapter from Helen Keller’s Midstream and Edgar Allan Poe’s “The Raven”. The organization received congressional approval for exemption from copyright and free postal distribution of talking books.

Display of NLS Player Cartridges and Earbuds

Since those early days of vinyl records, talking books have evolved. First with cassette tapes in the 1960s and 1970s. Then compact disks in the 1980s and 1990s. Today it is digital downloads from a computer. The options of reading materials have also expanded with a wide range of fiction, non-fiction, magazines, foreign languages and other selections to choose from. Additionally, the NLS National Library for the Blind and Print Disabled has become the dominant source for free reading materials. Today, audio books have gathered universal mass appeal with both sighted and blind people enjoying them. This is so true because I participate in two book discussion groups with sighted peers. Some of them enjoy reading books in audio verses print. I remember when I first joined the talking book library it kept my love of reading going. The ability to access books in audio format has kept the world accessible to me. I have been able to learn, grow and be entertained because I can read books in this format.

Invention of the Screen reader

In 1986 Jim Thatcher, IBM Researcher and Accessibility Pioneer, created the first screen reader at IBM. It was called the IBM Screen Reader for DOS. At first it wasn’t trademarked because it was primarily for low vision staff members. Since it was created for DOS, which is a text-based Desktop Operating System he later created a Screen Reader 2. This one would be used for graphical interface PCs such as Windows 95 and IBM OS/2.

IBM wasn’t the only company developing screen readers. Freedom scientific produced JAWS, currently the world’s most popular screen reader. It was developed first for DOS and then Windows. I have been using JAWS since 1998 or so and it has revolutionized my life. First, it has allowed me to keep working. Second, it has allowed me to access personal information to maintain my quality of life. I can handle my finances, do internet searches, send emails, and even write this blog post.

Empish Using an iPhone

in 2009, Apple announced a new feature called VoiceOver making their products more accessible to people with visual impairments using the touch interface of the iPhone beginning with the iPhone 3GS. VoiceOver is the screen reader built into Apple operating systems including macOS, iOS/iPadOS, and WatchOS. Initially I was not on board with the iPhone. It took some time because of its flat surface yet eventually I bit the apple. Now I use my iPhone daily and listen to the AppleVIS podcast to keep up with the latest trends.

Invention of Braille

Empish Reading Braille

Braille is a code created for reading and writing. This code is a series of raised dots on paper. The braille code is made up of letters, numbers and symbols. It is not another language. The alphabet is based on a cell that is composed of 6 or 8 dots, arranged in two columns of 3 or 4 dots each. Each braille letter of the alphabet or other symbol, such as a comma, is formed by using one or more of the dots that are contained in the cell. Braille is usually found in a large book format on doubled sided paper to maximize space and can be read for math, science and music.

Born in 1809, Louis Braille was a Frenchman who lost his vision from an accident as a small child. When it was apparent that he could not be educated by just listening, his family enrolled him in the Royal Institution for Blind Youth in Paris. While there, as a teenager Braille began the process to create a reading and writing system by touch. He continued to perfect the system and as an adult became an instructor at the Institution.  Unfortunately, Braille’s method was not accepted by the sighted instructors and he died in 1852 never seeing his creation used by the blind. Eventually, the code was accepted and today this system is used all over the world.

A black and white braille label gun with turn dial displaying both braille and print letters and numbers.

I use braille mostly to read labels created with my braille Dymo label machine. These labels are great for all kinds of things like my spices, file folders in my home office, music CDs, and even lipstick tubes. I also read braille on calendars, greeting cards and bathroom signs. Got to know which door is the lady’s room, you know!

Empish Reading Braill Bathroom Sign

Without these inventions I am not sure what my life would be or look like. I actually shutter at the thought. I am grateful for the people who designed and created these devices to help me have a better life as a blind person.

I’m Fully Vaccinated but Will Still Wear a Mask

Empish wearing orange top with her college alumni, Florida A&M University, facemask

Today marks two weeks after my second vaccine shot. This Means I am fully vaccinated and according to the recent announcement from the Centers for Disease Control and Prevention (CDC) I can stop wearing my mask under certain conditions. The guidelines say, “If you are fully vaccinated, you can resume activities that you did before the pandemic without wearing a mask or physically distancing, except where required by federal, state, local, tribal, or territorial laws, rules, and regulations. That includes local business and workplace guidance. You will still be required to wear a mask on planes, buses, trains, and other forms of public transportation traveling into, within, or out of the United States, and in U.S. transportation hubs such as airports and stations.”

I should be elated by this news, right? Yet, I am not. Don’t get me wrong I am happy because part of this means that as a country, we are moving in a positive direction with this virus but I still feel some trepidation. The reason being is that I am vaccinated but what about others around me? It’s not like I can tell in some kind of way who is vaccinated and who is not. So, because of that I am still going to wear my mask in public places like grocery shopping or getting my hair done.

Three Reasons for the CDC Decision

I was listening this morning to the Pod Save America podcast and they interviewed Dr. Fauci. He said the CDC decision came about because of three things:

1.  The vaccine is better than was shown in clinical trials.

2.  The vaccine works well against variants.

3.  Studies are showing high levels of protection, meaning that you are less likely to get infected and to pass on to others.

Guidelines Not a Mandate

The news to stop wearing a mask is not a mandate but just guidelines. The CDC wants to help assure vaccinated people they are safe. I can appreciate that information and will proceed with caution. I trust science but don’t trust people in the same way. I realize after the announcement was made that we will be on an honor system. Even if you show your paper vaccine card that might not be enough proof because there are already forged versions floating around. Additionally, the vaccine card information is only recorded in your state; there is no federal database.

The other concern I have about this is the announcement was made so quick. Businesses and government officials were caught off Gard and were surprise. This doesn’t give much time for people to get their act together and figure things out. If you are a business owner, how do you handle this news? It doesn’t seem to be any recommendations or advice for you. It is like every man for himself to figure it out. This is a problem and will leave people all over the place doing all kinds of things. Good, bad and otherwise. I was thinking that maybe rolling this guideline out over time in stages, giving people time to adjust would have been a better approach.

Empish grocery shopping wearing a facemask

Another concern I have is that we have not reached heard immunity. Lots of people are not vaccinated or have just gotten the one of two required shots. Some people don’t want to get vaccinated and some people can’t for various reasons. So those folks still need to wear a mask. But will they? This is another reason why I still will wear mine.

Don’t Know What the Future Holds

Lastly, COVID-19 is new. Going through a pandemic is not something we are experts at doing. Information about this virus changes constantly and who knows what we will be told next week, next month or even next year. Yeah, I am fully vaccinated but how long will that last? Six months? A year? Will I have to get a booster shot? What about getting the virus even though you are vaccinated like the members of the New York Yankees? These questions have not clearly been answered and so again, this is also why I will continue to wear a mask. We just don’t know what the future holds. I have been doing the 3 W’s: wash my hands, wear a mask and watch my distance for the past year. I don’t want all of this work and effort to go down the drain so until I get more clear and solid info, I will continue to wear my mask even though I am fully vaccinated.

Now, what about you? Now that the CDC says you can stop wearing a mask if fully vaccinated will you do so? Why or why not? Share your thoughts with me.

Got Zoom Fatigue? Go Audio Like Me.

Zoom Logo

A few weeks ago, I was reading an interesting newspaper article about people struggling with Zoom calls. In the article it referred to a Stanford University research study that revealed what people like me, who work from home, already know-Zoom fatigue is real. Sitting at a desk for long periods of time while staring at a computer screen and trying to keep your mind from wandering off can be exhausting. Yes, I know because you are preaching to the choir and I am not even on Zoom calls every day! In the study they highlighted 4 factors causing the problem:

1. A need for constant eye-to-eye contact.

2.  Seeing your face on screen while talking.

3.  Having to sit still for long periods of time.

4.  Challenge of communicating via body language.

Empish Sitting in Front of Laptop Wearing Headset with Microphone

Now, the suggested solutions offered I found quite intriguing because as a blind person I do them already for my calls. I began to think perhaps this is why my fatigue is not so bad? Perhaps being blind has some benefit when it comes to Zoom-type videoconferencing? There were three main remedies to help with exhaustion:

1.  Turn off the video camera and do audio calls only.

2.  disable the selfie window.

3.  Reduce the size of the call window.

Yep, its confirmed. I do these suggestions already. The majority of the time I do audio Zoom calls. I only turn on video when it is mandatory like a job interview. Or when the person has to see me like a telemedical appointment. Otherwise, the video is off. For example, my book club meeting on Bookshare is done via Zoom and the administrator turns the video off making the entire meeting audio only.

I also pick using the phone option when available. If I get a Zoom invite with a phone number included, I will sometimes call on my landline instead. This helps me to stay alert and engaged. I can get up from in front of my computer and move around, stretch my legs or go into another room. A change of scenery can help boost energy and maintain participation.

Empish Using a Landline Phone

The bottom line when it comes to Zoom fatigue is that as a blind person, I don’t have the vision to be as tired like sighted folks. I can’t physically stare at a screen or try and interpret body language. I am not trying to see my selfie in a little box so I don’t have that kind of stress. I also don’t have to be concerned with keeping constant eye contact because I can’t do it anyway. So, a lot of this stuff goes out the window for me. Two real challenges I have is the long amounts of time sitting in a chair and keeping my mind focused on the topic.

But asides from those two things, who knew being blind would have this kind of advantage? Those Stanford University researchers should have come and talked to blind folks like me. I would have gotten them hipped to the situation and knocked off some time and energy on that research. Minus my consulting fee. HaHa! Perhaps using my tips or the ones at Stanford will help you too with Zoom fatigue.

Ever Lee Hairston Shares er Ambitious Life Journey of Blindness

Wall of Book Shelves

Reading with My Ears Book Review

The first time I heard about Ever Lee Hairston was several years ago when I read the book The Hairstons: An American Family in Black and White by Henry Wiencek. In this depiction of two large families; the author wrote about an incident at a family reunion. Ever Lee called out the white Hairstons for how they mistreated her family who were sharecroppers on the land for many years. I remember thinking how bold this blind Black woman was to do this in this large crowded room full of people. However, she was spot on to say something because the white side of the family had profited for so long while her family lived in poverty. Second time her name popped up was while listening to a favorite podcast, called The Nod. She was being interviewed about her live. Then the third time was another podcast by Freedom Scientific sharing her life once again but this time including her published book. After running into this lady three times, I told myself this was no coincidence and that I needed to read her book to get the skinny on her life.

I found it in audio at the National Library Service for the Blind and Print Disabled and finished it last week. The book is titled Blind Ambition: One Woman’s Journey to Greatness Despite Her Blindness. I was interested in her life story because I don’t come across many blind Black women   who have documented their life. The only other time was when I read about Haban Girma. As I read her story, I pulled out four core areas Ever lee was ambitious about: her education, career, marriage/family and the National Federation of the Blind.

Ambitious about Education

Ever Lee grew up in the segregated south on the Coolemee plantation in Mocksville, North Carolina. She is the third of seven children. Her days were filled with school and picking cotton. She realized from an early age that sharecropping was not the life she wanted to live. It was hard physical work. She was fearful of snakes and her family had little income. She had a desire to become a nurse because one of her sisters was constantly ill. She knew her parents had no money for college so being the ambitious person she was, Ever Lee came up with a plan. She heard about work opportunities up north and during the summer she worked as a live-in maid to save money for school. During this entire time Ever Lee struggled with her vision. She knew something was wrong but was not sure exactly what as she didn’t go to an eye doctor and never told anyone because she was ashamed. All through college, living with her aunt and uncle, and working as a live-in maid Ever Lee kept her vision problem a secret. This caused her to struggle through school because she couldn’t always see the chalkboard, her printed books or exams. When it was time to take the nursing exam, she failed the eye test portion. She was deeply disappointed but pressed on and got her teaching degree instead.

Ambitious About Career

Display of NLS Player Cartridges and Earbuds

Ever Lee was ambitious about her ability to be employed. She shared an incident where she applied for a position and got the interview. She dressed professionally, showed up on time with resume in hand but when she arrived it went downhill. The employer told her they had never hired a blind person before and she left disappointed. I also had a similar experience which happened shortly after I lost my vision. I went in for an interview and the first thing said to me was, “Oh, I didn’t know a blind person would apply for this job.” When that was said I knew, Like Ever Lee, I wasn’t going to get the job. That one statement spoke volumes about what that employer thought about the blind even though I was qualified for the job.

But like me Ever Lee pressed on and found a more opened-minded employer who not only gave her a job but helped her advance her career. She worked several years as a teacher and then later as a counselor at the Department of Health and Human Services. I worked for DHHS too when I was in high school and my first year of college. I was not blind at the time but I did have a blind co-worker, another one with cerebral palsy and a supervisor who used a wheelchair. Like Ever Lee this experience was rewarding, self-affirming and built my self-confidence. It also helped me when I went blind because I was able to pull from the experience to help me make it through.

Ambitious about Marriage and Family

Initially Ever Lee was hesitant about pursuing dating and romantic relationships because she was fearful her blindness would be exposed. She didn’t date in high school or college. She had been keeping it a secret the majority of her life.  But she did ultimately let go and fall in love with a guy and marry him. The relationship didn’t last because he was gaslighting and cheating on her. She realized this and took her son and left. She figured out what to do, got her career together, purchased a home and eventually met another man she married. When that marriage ended from abandonment, she still kept going. I have to appreciate Ever Lee sharing these intimate details of her life. failed relationships are hard to deal with and being public about it takes courage. Also, I admire the fact she shows them as just relationships where blindness is not the center. Many times, I have had to address the question/concern about my disability in a relationship as if it is the most important thing when so many other factors make up a successful match.

Ambitious About National Federation of the Blind

After years of struggle and disappointment, Ever Lee finally got a proper diagnosis. She was told by an eye specialist that she had a genetic eye disease called retinitis pigmentosa (RP). She was also told that it would probably get worse over time. Ever Lee’s vision did get worse and for a long time she relied on others to help. Or she “faked it to you make it.” While Ever Lee worked at DHHS she learned about more services for the blind. She got a call from the National Federation of the Blind inviting her to attend   their convention. Her aha moment came when she was offered an agenda in braille/large print. By this time, she could no longer read print and she didn’t know braille. This is when Ever Lee knew she needed more blind skills. So, she took 6 months off from work for vision rehabilitation training. She had already been using a white cane but needed more education on how to live an independent life as a blind person. I could relate too. I also took off from work for about a year to go through a similar program for the same exact reasons. Attending the convention and emersion in her training was the beginning of Ever Lee’s full involvement in NFB. After that she became an active member, advocate, mentor   and later joined the national board of directors. After losing my vision I also got deeply involved in the disability community. First, I became an advocate, then later public educator. Today, I am a writer and blogger on the topic of blindness.

Films About the Disabled Receive 2021 Oscar Nominations

Container of Movie Popcorn in a Colorful Cardboard Box

WooHoo! Three films featuring people with disabilities got the Oscar nod this year. I was so excited because representation matters. I was able to view two of the three films enjoying them both. The Oscars have been criticized in the pass for its lack of diversity and inclusion but this year I saw progress. The three films are:  Feeling Through, Crip Camp and the Sound of Metal.

Feeling Through

Feeling Through was nominated for Best Live Action Short Film. This 90-minute film is about a homeless teen who meets a deafblind man and how that encounter changes his life. Tereek (Francisco Burgos) is a young man trying hard to keep his homelessness a secret and is desperately looking for a place for the night. While texting friends, hoping he can crash with them, he ends up helping Artie (Robert Tarango), a deafblind man waiting for a bus. Their interaction is complicated. They have differences in abilities, temperaments and ages. However, as Tereek helps Artie navigate a ride home, he learns to see the world through another perspective beyond his own  and broadening his horizons in the process.

I saw this film on YouTube and had

some mix feelings about it. although I enjoyed it because it was available in audio description, featured people of color in a lead role and people with disabilities I struggled a bit with the storyline. Perhaps it was my own uncomfortableness with the vulnerability of Artie being deafblind and depending on others. As a blind person I found it a little unsettling to have to hold up a sign asking for help like that. I began to wonder did this man need some training for the deafblind? How does that work? Those kinds of questions swirled around my head. Depending on the kindness of strangers can be a little unnerving when you have a disability. But in this film, you see it play out and Artie is helped but also taken advantage of which bothered me. Yet, at the end of the day the film shows the challenges of both characters; one obvious and one not so much, which makes me think this is what the film was all about.

Crip Camp

The next film is Crip Camp and it was nominated for Best Documentary Feature. Crip Camp: A Disability Revolution follows the birth of the disability rights movement. The film starts in 1971 at Camp Jened, a camp for teens with disabilities and focuses on how those campers become activists in their fight for accessibility legislation.

I saw this film on Netflix and also in audio description. Absolutely loved it! It reminded me of my years working as an advocate at disABILITY LINK, an independent living center. I appreciated the real rawness of the film. They just showed you what it was like to be disabled and how much fun they had at camp. I like the fact the camp gave them the freedom to just be themselves without restrictions. Too many times others who are not disabled want to dictate our movements which can be quite suffocating. Viewing the film, the campers looked like they were having so much fun as any person attending camp should regardless of ability.

The Sound of Metal

The Sound of Metal is the third film and got the most nominations. It was nominated for six Oscars: Best Picture, Best Actor (Riz Ahmed); Best Supporting Actor (Paul Raci); Writing (Original Screenplay); Film Editing; and Best Sound.  Out of all those nominations It won an Oscar for Best Sound.

The film is about   punk-metal drummer, Ruben’s (Riz Ahmed) journey of losing his hearing. After several one-night gigs, he begins to experience intermittent hearing loss. When a specialist tells him, his condition will rapidly worsen, he thinks his music career and life are over. His bandmate and girlfriend Lou (Olivia Cooke) check the recovering heroin addict into a secluded sober house for the deaf in hopes it will prevent a relapse and help him learn to adjust. But after being welcomed into a community that is very accepting, Ruben has to choose between his equilibrium and the drive to reclaim the life he once knew.

I have not seen this movie yet because it was released on Amazon Prime but after reading the reviews and summary’s I might have to get a subscription. I can understand why this film got so much Oscar attention. The film sounds like a good one because of the realistic portrayal of a man losing his hearing which directly impacts his career and things he loves. How do you play music without hearing it? I can understand his dilemma. I went through something similar when I went blind and was trying to figure out how to be a journalist. This profession is writing and I can’t see. How does that work? I appreciate the storyline because people need to see how a disability can come into your life at any time. As a matter of fact, most people are not born disabled. So, seeing the journey on the big screen is commendable.

I applaud the Oscars for nominating these films and look forward to more hitting the big screen in the future. It is important that our stories get told, acknowledged and rewarded just like others.

How I Volunteer Virtually Regardless of a Pandemic

black and white line drawing of two feather pens in an inkwell

National Volunteer Week

When most people think of volunteering in the community it is something that you physically do such as feeding the homeless, building a house, tutoring/reading to children, registering people to vote, or running errands for seniors. All of those tasks are great volunteer opportunities and are well needed in the community but there are things that I have done as a volunteer sitting right at home.  I have been volunteering all my life in a variety of projects. Even after I went blind, I still kept volunteering. I just had to shift the way I did it. I figured out a way to use my journalism skills to help my community and even during a pandemic. This week is National Volunteer Week; April 18-24.   The Points of Light established it as an opportunity to recognize the impact of volunteer service and the power of volunteers to tackle society’s greatest challenges, to build stronger communities and be a force that transforms the world.

Started Virtual Volunteering

My first step into virtual volunteering was right after I went blind and lost my corporate job to downsizing, I was rethinking my career path and decided to volunteer at a non-profit. Since I was now a part of the disability community, I wanted to learn more and give back. I worked on a newsletter for a disability non-profit agency called disABILITY LINK. I collected articles and other content for the newsletter via email and phone. Wrote and edited the pieces, then submitted to my supervisor for publishing.

This was a good opportunity for me because it allowed me to give back, use my journalism skills in a professional way and learn about the disability community. It was a win-win all the way around. I began to realize that I could use my writing in a more meaningful way than just as a career.

Volunteering as a Radio Producer  

Empish with Guest Roderick Parker at GaRRS Studio

The next opportunity came in 2006 where a friend recommended me for the position. I was asked to help produce the Eye on Blindness Show by the Georgia Radio Reading Service. Prior to this time, my experience had been in writing only. So, this stretched my journalism skills and I was up for the challenge. Each month I was directed to find guests for the 30-minute show, do research, and write up show notes and promotion materials. All I did from home using my landline phone and computer. I also collaborated with the show’s host on topic ideas and future guests. I volunteered for about 3 years on the show. Later I was asked to come back and not only produce but host as well; which I gladly did for another 3 years.

Empish Using a Landline Phone

Volunteering as a Blogger

One day I got an email request for bloggers/peer advisors for a website called VisionAware. The website was a resource for people new to vision loss and they were looking for people to talk about their lives and give advice and information. Well, that was right up my alley. So, I filled out the application form and signed on. That was back in 2012 and I am still volunteering with VisionAware to this day.  We meet once a month via Zoom conference call to discuss topic ideas and themes for the site. We work to give true and honest information with a real-life experience. I write blog posts from home and submit via email. Volunteering at VisionAWare is rewarding because I can help others like myself and I get to work with a great group of people.

Virtual volunteering has been a wonderful experience for me. The things I have learned. The people I have met. The lives that have changed. This is all for the good and all from the comfort of my home. There are creative ways to volunteer. We are still in this pandemic and traditional methods may not be possible but you can still serve your community virtually. Check out the Points of Light database for virtual volunteer suggestions.