Helen Keller once said that she would rather walk with a friend in the dark than alone in the light. Her statement reflects the importance of friendship. Close companionship is just as or even more critical than being sighted. I can relate. The friends that I have made over the years are so important to me. Friends who have helped me during those early days of my visual disability and are still around. Friends I made through work related situations. My book club friends. My blind friends. My writing friends. The list goes on and on. What would I do without the great and wonderful people in my life? Today, I give honor and appreciation for my friends. Today is National Friendship Day.
I tell you, dealing with this pandemic has made my friendships even more special. Even more precious. This virus has caused me to look closer at life and my own mortality. I remember when the pandemic first hit, I was calling and checking on friends. They were calling me too. It was so funny because I could hardly get any work done for my phone ringing and my email pinging. But I didn’t complain because I was grateful that someone cared about me. That someone was checking on me to see that I was okay and doing alright. And the thing is, we are still doing this over a year later. This pandemic is not over and we got to continue to stay close. To stay in each other’s lives.
Calling Friends on the Phone
So, how best to keep that connection going? Well, I use both old and new technology. I rely heavily on my handy dandy landline phone. Yes, I know, I am old-fashion and out of-date. But my landline phone works beautifully and I love it. It is so easy to pick up the phone and have a chat with a friend. Day or night. Weekday or weekend. It doesn’t matter. Hearing another person’s voice on the other end works wonders. It lifts the spirit. It puts me in a positive mood. It’s like a warm embrace or a tight hug-all through the phone.
But I also use my newer technology, my iPhone. Although mostly as an address book to store my friends contact information. I just ask Siri for their phone number and then dial it on my landline. I find it hard to talk on my iPhone because of its smooth flat surface. It slips too easily from under the crook of my chin. During conversations, my cheek gets warm and sweaty from the surface. This is not a good look or situation when I am trying to converse with a friend. Additionally, I haven’t found earbuds helpful yet. Maybe I should investigate that more.
Receiving Emails From Friends
When talking on the phone is not an option, emailing works well. Sending a quick note to check in or chat has been a great way for me to stay connected to my friends. Especially, those living away from me. I have friends I have maintained relationships with for years this way. We will send emails back and forth to see how things are going. How is work, the family, the weather, etc. It is so nice and heart-warming to get an email. It is nice to have electronic communication with another human being I have a close connection. Sometimes it takes time to type up the message, run spell check and read over for clarity. But it is well worth it because it is going to someone who is important in my life-my friend.
There are many other ways to stay connected to friends that I didn’t share. Text messages, social media, Zoom video calls, and even letters and greeting cards. But whatever method you use, I urge you to stay close.
Today in the disability community, we recognize the signing of the Americans with Disabilities Act (ADA). In honor of this landmark civil rights legislation, I read an audiobook “Being Heumann: An Unrepented Memoir of a Disability Rights Activist” by Judie Heumann. She is a disability advocate and her actions played a vital role in the passing of this law. You might have heard of her more recently as she was featured in the 2021 Oscar nominated documentary Crip Camp that aired on Netflix. However, Judie is known much more than her role in a film. Penguin Random House summarized her story best, “One of the most influential disability rights activists in US history tells her personal story of fighting for the right to receive an education, have a job and just be human. A story of fighting to belong in a world that wasn’t built for all of us and of one woman’s activism—from the streets of Brooklyn and San Francisco to inside the halls of Washington—Being Heumann recounts Judy Heumann’s lifelong battle to achieve respect, acceptance and inclusion in society.”
Being Heumann Overview
Judie starts her story at infancy where she describes being paralyzed from polio at eighteen months and how her struggles for equality began early. She was labeled as a “fire hazard “because of her wheelchair as she fought to attend grade school. Her battles with the school system continued when she won a lawsuit against the New York City school system for denying her a teacher’s license because of her paralysis, where her actions set an example that ultimately improved rights for disabled people.
She continued to be a role model of activism and self-determination when she rolled her wheelchair through the doors of the US Department of Health, Education, and Welfare in San Francisco as a prominent leader of the Section 504 Sit-In. It was the longest takeover of a governmental building in US history. Judie and a community of over 150 disabled activists and allies were able to successfully pressure the Carter administration to implement protections for disabled people’s rights, igniting a national movement and leading to the creation of the ADA.
Different Backgrounds but Many parallels
I left encouraged after reading this book about Judie’s life. Although I didn’t become disabled as a child, am not Jewish or from the north and our disabilities are different, I did see parallels. I have worked several years at an independent living center. I have dealt with the struggles for inclusion and acceptance. I have felt shame or confusion when someone calls out my disability or ask intrusive questions. I have had struggles with accessing the basic things I need to live and work.
Fine Line of inclusion and Exclusion
I understood her point about walking that fine line of inclusion and exclusion. Judie shared an example of this when at church her mother didn’t want the pastor to carry her up the stairs to participate in the activities with the other children. Her mother thought it was too much and it would be a burden even though the pastor was okay with it. I could relate with this situation so strongly. It is part of the stress of my disabled life and not wanting to be a burden. It is about picking and choosing your battles. It is about not wanting to wear out your welcome. If I ask to many times, people will get tired and annoyed so I pull back and either don’t ask much or don’t ask at all, neglecting my needs in the process. It is also being in that vulnerable and precarious position of depending on people to be nice. If a person is nice about it then I feel okay to ask and move forward; if I sense some resistance then I pull back and don’t ask.
Focus on the Barrier Not the Disabled
One of the things I have learned about being a disability advocate and Judie also brings up in her book is the mindset we must have for the world to change. When she was pushing for Section 504 she and other activists had to help people understand it is not because you can’t walk that you can’t get into the building rather the building is not accessible. Changing the mindset and putting it on the barrier and not on the disabled person is the way of creating the change. For example, I wrote in a post about applying for jobs online and inaccessible sites. The answer is not for me to regain my sight or get a sighted person to help but to fix or create accessible websites that work with my screen reader.
Feelings of Being Ignored
Judie said when people ignore you, it is an intentional display of power. They act like you don’t exist and do it because they can. They believe that nothing will happen to them Ignoring people silences them. It avoids resolution or compromise. It opens feelings of unworthiness because it makes you feel that you deserve this treatment in the first place. In the end you are forced to choose whether to make a fuss or accept the silent treatment. If you stand up for yourself then you are viewed as aggressive because you break the norms of being nice and polite, which can make you feel worse.
OMG! When Judie said this, I was thunderstruck! What she said was so true and powerful. So many times, I have felt a loss of power as a Black disabled woman when I have been ignored by someone who didn’t want to deal with me. There would be times when I just didn’t have the energy or the resources to fight back. There have been times when I would regroup and try another approach but in the end being ignored really sucked! I would have to figure out other ways to reclaim my power and self-confidence.
It’s About Human Rights
Judie notes that people need to understand that Section 504 and the ADA was about civil and human rights for the disabled. Many people understand the fight for racial equality, or gender equality but when it comes to disability people don’t connect the dots. Many times, I have had to say substitute one of the other minority groups and replace with the word disability. Then people began to understand the struggle for equality. Judie said the basic logic in society is that people with disabilities won’t benefit as much from X, or Y or Z as much as people without disabilities. Therefore, X or Y or Z is not essential. They should accept the idea of going without. The same goes for transportation and employment. But what kind of logic is that really? The underlined assumption is that people with disabilities have less potential to learn and contribute. That we are less capable and not equal. Judie says the problem with this logic is that disability is part of the human condition. As we live longer more people will become disabled. What we should do is accept it, plan for it and build our society around it. Disability is coming whether we want it to or not. I totally agree and tell my temporary abled body friends this all the time.
I will end this blog on this profound point Judie made. We underappreciate our human rights in America. You won’t realize their importance until they are gone. These are such powerful words. Therefore, we must be constantly vigilant because our rights are precious. We can lose them. They can be taken away at any time.
Those of you who spend time surfing the web know full well advancements in computer technology have made it easier and better to search for employment online. As a job seeker, we no longer must go in person and fill out a paper application or physically fax a resume and cover letter. Today we can independently and on our own time go online to search for jobs.
With my screen reader, I can upload my resume and cover letter to a prospective employer’s website. Or I can create a username and password to log in to generate an online profile. Or I can fill out an electronic application and search for a job using an online recruiting job board. All these advancements are awesome because as a blind person I can apply for jobs from the convenience and comfort of my home. Yet, I have face challenges because these sites are not always accessible hindering me from applying for positions. Additionally, many employers miss out on qualified, talented applicants, like me, because they create external barriers with inaccessible online application tools.
This is why I was excited to share my job searching challenges with Inclusively, a professional network connecting candidates with disabilities, mental health conditions and chronic illnesses to jobs and inclusive employers. I gave several examples of how I struggled with inaccessible form fields, log in screens and online applications. Read all the details and learn more about Inclusively’s employment platform here.
This past week I read a motivating and encouraging book. It challenged and inspired me to take my career to the next level. The book is titled Your Next Level Life: 7 Rules of Power, Confidence, and Opportunity for Black Women in America by Karen Arrington. She is the founder of the Miss Black USA Pageant, creator of the Next Level Women’s Summit, winner of a 2020 NAACP Image Award, a global philanthropist and mentor to thousands of young Black women.
It addresses the question what is the next level life for you? While keeping in mind it is different things for different people. Arrington looks at how Black women can feel stuck or trapped by other people’s expectations of what can be achieved. She wants the reader to stop playing small and start redefining what success really means. As I read this short but powerful book, I was deeply moved by Arrington’s passionate words because she reinforced a lot of the thoughts and ideas I had as well. Yet I felt a little overwhelmed by all that I was challenged to do. I have accomplished a lot in my life and career. Still reading the book I realized I have more to do and wondered how to do it as a Black woman with a visual disability. I struggled a bit to see myself fully in this book. Very few business and career books address the intersectionality of race, gender and disability. This is something that many of my disabled working friends talk about often. However, I decided to take the gems in this book and apply them where needed.
The Seven Rules
Arrington gives seven rules for leveling up your life. They are presented as chapters with thought-provoking questions, tips and ideas to handle each one. Her seven rules are:
1. Identify Your Superpowers
2. Find Your Next Level Friends
3. Expand Your Horizons
4. Magnetize Money
5. Position Yourself Like a Star
6. Keep It Real
7. Give Back From Day One
Sometimes My Superpowers Need a Rest
AS I read these seven rules, I thought about the ones I needed to focus on the most. Which areas of my life needed the most improvement? I figured this was the best approach to the book. This way I could center myself on making small incremental changes. When it came to the first rule I was already there. I have a good self-awareness and know my strengths and weaknesses. Sometimes the challenge for me is whether I want to stretch myself. Or whether I want to give myself a break because that superpower needs a rest. Sometimes you can be known for being good at a thing until you get tired and need a break. I think it is good to shift things around a bit to get some balance.
Challenged to Level Up Connections
Now, the second rule I really need to work on. Finding those level friends has been a challenge for me and it has not been for lack of trying. This year I began to work on this one more than previous years. I had joined two writers’ forums in hopes of building a community for my freelance work, but it went flat. Reading this chapter showed me I need to get back on the horse again. I also see that I need to reevaluate my current connections to see if they are in alignment with my life and goals. As Dr. Phil would say, “How’s that working for you?” I like what she said about how you are the sum of the five people you hang with. I had to really take a pause and think about that statement. My close connections are not bad, but they are not helping me to move forward and that needs to change. Fortunately, I am not around negative people, but it is more that the people I am around are not moving in the same direction as me.
rule four on Magnetize Money was spot on. She said that wealth is your birthright. As women we don’t get equal pay for equal work, even more so for Black women and even more so for disabled women. This is a hard one and I have mixed feelings about what she said. Yes, there are more opportunities to create income and wealth but people with disabilities still did with huge barriers to employment. I have been taking courses, as she suggested, to help advance my career. Today, I am working on improving my website you are reading this blog on right now. I am also working on my Microsoft skills because I just installed Office 365, and I plan on learning how to spruce up my LinkedIn profile for maximum appeal. Still at times I feel no matter how much education, training and work experience I acquire, opportunities still elude me.
Other Rules Reinforced My Own Thoughts
The rest of the book’s nuggets of wisdom were encouraging and again reinforced my own thoughts and ideas. I reflected on her words about how I should be confident and unapologetic about who I am. That I should always keep it real because what I do is who I become. And, of course giving back. I totally agree with that rule. I have been a firm believer in contributing to society and community. I have been a volunteer for many years and continue to do so with my writing. So, if you are looking for a great read to help level up your career. One that will encourage you to take it to the next stage. One that will inspire and motivate you without being judgmental, then this is the book for you.
Last month Mattel added the Helen Keller doll as part of their Inspiring Women Series. She is the 12th doll among the great women in the collection such as Rosa Parks, Maya Angelou, Eleanor Roosevelt and Susan B. Anthony. The doll is dressed fashionably in a skirt and blouse. She is holding a book with molded braille on the cover which the national Federation of the Blind provided help and feedback. The doll looks very much like her except for the eyes which has stirred up some controversy. It is said that Keller had unilateral proptosis, which is the protrusion of one eye. This condition resulted in asymmetrical looking eyes. She was often photographed in profile or at an angle to cover up this fact.
Why the Controversy
Now, you might be asking what is all the hype about? What is the problem? Mattel decided to make a doll based on an extraordinary disabled American icon. Keller was an author, political activist and lecturer. She was also the first deafblind person to earn a Bachelor of Arts degree. She traveled all over the world. She met famous and important people. She fought for civil and human rights. She co-founded Helen Keller International, an organization initially for blinded WWI soldiers. She was outspoken and a feminist. She is inspiring and a great role model. So, designing a doll in her likeness sounds like a wonderful thing, right? Well, some say the issue is the doll is not accurate because her eyes look “natural” or “normal” whichever term you prefer. Some Disability advocates feel the doll should be a genuine representation of what Helen Keller really looked like. But I wonder about that.
Keller Took Portraits in Profile
Today is Helen Keller’s birthday and if she were still alive would she care the doll was not an accurate depiction? The reason I wonder is that she took pictures with her face not completely facing the camera. So that tells me she knew about her eyes. Maybe she was concerned about how they would look in a photo. Or maybe she was advised this was the best approach for a great picture. I have been there before myself. I have been told when taking pictures to adjust my smile and facial features. Sometimes I have been asked to remove my white cane from the shot and depending on the situation I do. It doesn’t mean I am ashamed of being blind it just means having my white cane in the picture is not always the best thing.
When Keller became an adult, she had her eyes removed and wore glass prosthetics. I also wear them too. They are ocular shells made of plastic. They are like large contact lenses laying on top of my eyeballs. My decision was totally cosmetic and a bit selfish. I just wanted to look and feel better. At the time I was wearing dark sunglasses because my eyeballs had receded and shrank making it hard for me to blink. So, it looked like I was sleeping constantly, and I was tired of my appearance and people questioning me about it.
In addition, I realized that wearing sunglasses, in some way, communicated to the world that I was ashamed of my eyes. The point was really driven home after attending a disability presentation called “Gawking, Gaping, Staring, Living in Marked Bodies” at Emory University. The presentation explored the history of how people with physical differences are treated in mainstream society. The presenter, Eli Clare, shared about how we must “cover up” our differences to be accepted. I realized that is exactly what I was doing with wearing the sunglasses. That night the shades came down both literally and figuratively. I was so deeply taken with this process I wrote a blog post about it called They Look So Real Wearing Ocular Lenses.
Creation of Barbie
Knowing the history of Mattel, I was not totally surprised with the creation of the Keller doll. I read a fascinating book titled Barbie and Ruth: The Story of the World’s Most Famous Doll and the Woman Who Created Her by Robin Girber. They were revolutionary in manufacturing Barbie. This doll was a real female with breasts, hips and thighs. During that time dolls were just round like balls and soft and cuddly. When Barbie came out parents were reluctant to purchase it, but little girls loved it because the doll allowed them to imagine being grown up. They could act like a real woman!
Explaining Disability Takes Energy
Critics said Mattel missed the mark and a teachable moment with the Keller doll. Keeping her eyes as they were would have been an opportunity to stay authentic and teach children about people who are different. Yes, I can see that, no pun intended. But I also see a doll with eyes that don’t look “normal” could be considered scary or uncomfortable to a child to look at or play with. Parents might not have the language to explain why the doll’s eyes look different. I deal with this stuff all the time as a grown woman, and it is hard. Constantly explaining my disability. How I live and move in the world. So, imagine a child? This is also partly the reason why many blind folks wear dark sunglasses. Getting back to what I said earlier when I wore them myself. We live in a world where differences are not easily accepted, and it takes a lot of work and energy. Sometimes you must decide how much of that energy you want to give. No judgement to my disabled readers. Also, it is about acceptance. Everyone wants to be loved and accepted. If “covering up” the disability will lead to that some people will do it. Or they might not want their disability to be a distraction or the focus. People just want to live and be.
Conflicted but Let’s Talk
I know this post might sound contradictory and all over the place. And it probably is. This topic is complicated in my opinion. It brings up many conflicting emotions for me. There is no quick and easy answer. However, one thing I clearly know, this doll has sparked conversation and that is a positive thing. We need to talk more and more about disability issues. Put things on the table and have open and honest dialogue. Push that big, loud pink elephant out of the room! Only then will we bridge understanding and acceptance. Then we won’t have to wonder about another doll and its representation of a disabled person.
Now, tell me what you think. Did Mattel miss the mark with this doll? Should they have created her with accuracy? If so, what do you think the reaction would have been?
The anthology Disability Visibility: First-Person Stories from the Twenty-First Century edited by Alice Wong has been on my audio bookshelf to read for months now. I finally stopped procrastinating and red this remarkable collection of writings by disabled and chronically ill activists, artists, and authors. The topics are as diverse as the type of disability presented. The 30+ entries cover technology, incarceration, fashion, homophobia, medical issues, organizing strategies, psychotherapy, racism, relationships, sexism and so much more.
Purpose of the Anthology
Wong is a disabled activist, media creator and research consultant. She is also the founder and director of the Disability Visibility Project, an online community supporting and amplifying disability media and culture. In the introduction, Wong shares about how story telling itself is an activity not an object. It is the closest we can come to a shared experience. She shares about how she didn’t grow up as part of the ADA generation. Rather it was her collection of stories about people with disabilities that helped grow her sense of community and connection. She wanted this book to reflect and contribute three things:
1. More stories about the disabled in the present while honoring the past.
2. More stories about every day disabled people verses highly profiled ones in the disability community.
3. Increase the diversity of the mainstream representation of disability which is mostly white and male.
The book is divided into four parts: Being, Becoming, Doing and Connecting. This anthology is not a disability 101 guidebook or the best of list. Wong makes it clear that these stories are not meant to explain disability and are not here to inspire, motivate or encourage the reader. Rather it is the disabled speaking in their own words about being disabled. The stories come in various forms such as: essays, speeches, an interview, a eulogy, statement and call to action. Content notes are provided for self-protection and access so the reader is given a heads up that the material might be difficult to read or triggering. This allows the reader to skip around and select the stories that are the most interesting or compelling. Unlike others, I read through the whole book from beginning to end. I wanted to hear about the lives of others with disabilities to feel a sense of connection and community. In this post I am featuring a few of the entries that resonated with me.
Part One Being
In part one, Being, the entry titled When You Are Waiting to be Healed hit a nerve with me because of its relatability. The author deals with a vision challenge called nystagmus where the eyes move around uncontrollably. She shares about her family and religious experience in looking to God to heal her vision problem. Boy, could I relate to this story! In the early days of my blindness, I was there too. Praying for healing and understanding because I was confused about what was happening to me. People around me praying and telling me to be faithful that God would heal me. But as my vision got worse, I had an aha moment. I realized this was going to be my life. Not that I stopped believing in God or prayer I just started focusing on learning how to live differently. The author shares that she was not a mistake waiting to be fixed and I totally agreed. I don’t look at my disability as something that I need to be healed from anymore. I don’t think that I need to be fixed or changed in anyway. I think this is exactly how I should be, and I embrace the beautiful life that I live.
Another similar story was I’m Tired of Chasing a Cure. Since my vision loss was due to an auto immune condition some people felt I should have spent more time researching cures and remedies. I just didn’t feel the need. The author brings up some powerful questions such as: how do we feel about ourselves? How do we feel when abled body people start advocating for cures which could eliminate our people entirely? These are some thought provoking questions and it is not that disabled people don’t desire a cure, but it would dominate their time. There would be no time to live. The author says the cost is too high because I miss living my life while chasing cures. This is so true. I have seen folks in the blind community spend a lot of time researching eye treatments, seeing various doctors, and having multiple surgeries to find a cure to their eye condition to the point they stop living. They also lack basic blind skills that could help them live a better life. Sometimes I think that maybe this is a part of the denial/acceptance phase of things. Yes, I know that being blind is not the sexiest thing in the world, but it is what you make it. It is about perspective and attitude.
Part Two Becoming
In part two, Becoming, Nurturing Black Disabled Joy was an insightful read because the author was so transparent about not always having joy. She said that “hope is my favorite word, but I didn’t always have it. My joy is my freedom.” We live in a world where we assume that joy is impossible for disabled people. That sadness, depression, loneliness, and shame are the only feelings. People wrongly assume the life of a disabled person must be miserable, But I tell folks all the time I have met many an unhappy, bitter, and pissed off sighted person. So, what does that say? We are all human beings and feel a range of emotions. The disabled are no different.
Part Three Doing
In part three, Doing, I absolutely loved the entry Why My Novel is Dedicated to My Disabled Friend Maddy. I felt a sense of connection because this author is a writer trying to get their book published. The author has a brain injury that makes using a computer screen hard. I appreciated the emphasis on interdependence where we rely on each other focusing on strengths. Too many times in society we have the “pull yourself up by the bootstraps” mentality but in reality, that doesn’t work. Maddy, a friend with a similar brain injury, helps the author edit the manuscript.
I could identify because in the blind community we do the same thing. One person might be totally blind and another low vision. We get in there and help each other with what needs to be done. As a writer, I could also relate because I have had to reach out to get additional support. I have had friends or paid assistance with reviewing my writing, taking pictures for my blog, or brainstorming writing ideas. Even this website and blog was not created by my efforts alone. I got help from others.
The author presses the need for more stories written by, about and for the disabled. I agree. Disabled success is not just about one person as portrayed in the media but many people behind the scenes helping to make the disabled person successful.
I don’t have the same exact disability as the author of Six Ways of Looking at Crip Time. Yet, I understood the need for extra time. I just never looked or thought about it as Crip time; that is time needed because of my disability. I find myself needing those extra moments in the morning to get up and get ready especially as I get older, and my body moves slower. I also need it in the afternoon. I find myself slow and sluggish around 3 p.m. and literally must lay down for a nap.
I have always noticed it in my writing. I have never been a fast-moving journalist. I knew back in college before I even became disabled those tight-type reporter deadlines were not for me. I preferred writing with a much longer lead time like for magazines or newsletters. Now, having a disability I see I am a slow writer. Pondering what I am going to say, listening closely to my screen reader, and monitoring my fingers snugged tight in a hand brace relieving my carpal tunnel
For many years I have advocated for better transportation. So, when I read the entry on the para-transit system in New York City I was nodding my head through the whole thing. I was like a parishioner in the amen corner at church, saying, “Yes, that is right.” Late pick-ups. Long ride around times. Drivers who don’t offer assistance. Poor route planning. Filing numerous complaints. Even being on TV and in the newspaper. Yes, I have done all those things too just like the author. However, at the end when she vividly described the driver using a cup to urinate in front of her on the bus that was it for me! The weird thing is I was not surprised because I had a similar experience. Not on PARA-transit but in an Uber car. I felt some of the same feelings as the author. Why did the driver wait until I was the only one left in the car to do this? Why didn’t he stop along the way to go to a bathroom? If I were a sighted white woman, would he have done the same thing? IF he would stoop this low, what other things would he do? And, no I do not want you to touch any of my belongings or take my hand. Unlike the author I was not too concerned for my safety. I think I was too mortified to think about that, but she brought up a good point about vulnerability because this person was exposing himself. Things can happen to women and specially to disabled women. Like the author I did file a complaint with Uber but not much came of it except an apology and that they would ensure I would not be matched up with that driver again.
Part Four Connecting
In part four, Connecting, I agreed with the entry titled The Beauty of Spaces Created for and by Disabled People also called crip space. This is a spot where you don’t have to justify or explain your existence. A place where disability is celebrated and embraced. Some think it is radical or tabu. The fact that we need our own space is disconcerting to people who can’t relate. The question becomes why you would want to associate with people like that. Perhaps for newly disabled people this kind of space would be overwhelming and uncomfortable. But for folks like me who are 20 plus years in the game being in a “crip space” can be quite reaffirming and enjoyable. It is because I feel comfortable in my skin and feel no shame around being blind. I have found my life as a disabled person fulfilling, happy and even adventurous.
As a matter of fact, I will be entering into my “crip space” next month when I attend the American Council for the Blind’s national convention. It will be my third year attending. This event is an opportunity for thousands of blind and visually impaired people to gather to talk, share, advocate and build bonds around blindness.
All the entries in this anthology communicate a wide array of experiences. Each an invaluable snapshot into what it is to live with a disability. The day-to-day struggles and joys of navigating the world through it. This collection of stories emphasizes the importance of sharing, writing, and documenting our own stories of life, love, joy, and pain.
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 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.
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.
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
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.
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.
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.
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.
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
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.
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!
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.
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.
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.
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.