Last week I heard on my news podcast and it was confirmed in my ADA email newsletter that the US Department of Justice was suing Uber for disability discrimination over its wait fee policy. AS I listened to the news I was elated. It was about time but as they say, “the wheels of justice roll slow.” I was not surprised at this news because for years Uber had been charging me wait fees. It has become part of the reason I moved away from using their service and started relying more heavily on their competitor, Lyft.
Lawsuit Against Uber Explained
According to the suit, Uber was discriminating against the disabled by not giving amble time to board the vehicle upon arrival. Uber charges a wait fee two minutes after a driver arrives, and the customer is charged until the car begins its trip. This policy was added back in 2016. Now, these fees are charged to everyone as a way to compensate drivers but were never intended for riders who are ready at their designated pickup location and/or need more time to get into the car. But fees were charged even when Uber was aware the wait time was disability related. For example, a person folding up a wheelchair or a blind person with a mobility aid navigating to the car.
My Experience with Wait Fees
This is what I find so interesting and why I felt the need to say something on my blog. I don’t typically speak on lawsuits but I will today. Uber says that wait fees were not intended to be charged to customers who are ready to go or who need extra time due to a disability. But I beg to differ because of my personal experience. I can’t begin to tell you the number of times I was already standing at the curb of my location when the Uber driver pulled up and I was still charged a wait fee. The number of times I had called the driver in advance letting them know I was blind, using a white cane and how I was dressed so they could easily find me and yet still charged a wait fee. The number of times I was standing with a store representative who helped load my shopping bags in the Uber car as I got in the back and was still charged a wait fee. The one time the driver asked my permission to go inside to the bathroom before we left and I said okay. Only later to be charged a wait fee.
So, my eyebrow is raised with a smirk on my face when Uber says the following, “We fundamentally disagree that our policies violate the ADA and will keep improving our products to support everyone’s ability to easily move around their communities.”
To add insult to injury, when I would alert Uber to the wait fee charges initially they would keep quoting the policy like I didn’t know what it said. As if I didn’t know that already. At first they would refund me the difference but would never explain why I was charged in the first place after I took the time to give details. Then after a while they stop the refunds altogether stating I had requested too many adjustments to my account. The wait fee amounts would be typically under a dollar, which is not much, but it was the principle of the thing that would get my blood boiling. I would do everything in my power to be ready when the driver showed up but it didn’t matter I would get charged anyway. So, now you understand why I finally left? I even asked around to other blind friends and they shared the same story. So, I knew it wasn’t personal but a bigger problem.
Transportation is Critical
Transportation is one of the most critical issues for those of us in the disability community, especially the blind and visually impaired. We need reliable and affordable transportation. Accessing our own transportation helps us maintain our self-confidence, independence and quality of life. I remember when Uber came to my town I was so excited and happy. The ability to get up and go like my sighted peers was absolutely wonderful. To not have to wait hours on public transportation was great. When things like this happen it really is hurtful and harmful to a community that is a bit vulnerable. It diminishes trust and respect for us as disabled folks. I am passionate about this topic and plan to give my comments to the US Department of Justice. They are asking for people with disabilities to share their experiences and I will do so. If you are disabled and have had problems with Uber’s wait fees I encourage you to do the same. You can contact the Justice Department at 833-591-0425 (toll-free), 202-305-6786, or send an email to Uber.Fee@usdoj.gov.
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.
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.
Did my title grab your attention? I sure hope so. Well, now that you are here reading my blog post let me explain what a shark, ABC and audio description have in common.
The Shark Tank
I am a huge, huge. Let me say it one more time. Huge fan of The Shark Tank. This one-hour show allows Entrepreneurs to pitch their small businesses to investors called sharks. The reason I am such a fan is I love the creativity and originality that is displayed on the show. There are such cool consumer products and all types of businesses. The ingenuity showcased is amazing! I also love the negotiating strategy used with the investors. They discuss why their business is worth what it is while the investors explain why they will give the money or not. Sometimes they haggle back and forth even getting a little heated but that is all a part of the show.
Watching The Shark Tank on ABC
I tune in every Friday night at 8pm Eastern Standard Time. On what station? You guessed it. On ABC. Do not call me. Do not text me. Do not ring my doorbell. Do not email me. You will be ignored. Because I am glued to the TV watching my Shark Tank. ABC has been running The Shark Tank for about 11 seasons and I have been watching it faithfully for several years now.
Audio Description of The Shark Tank
Now you understand my love of Shar Tank and watching it on ABC. Now let me explain the audio description part and how that connects. Audio description provides extra verbal narration of visual elements happening in a TV program or film. It could be hand gestures, facial expressions, physical movements or a description of clothing and action. It describes things that a person with vision loss might not notice or realize. As of July 1, 2018, ABC, CBS, NBC, Fox, Discovery, HGTV, History, TBS, and USA are each required to provide 87.5 hours of audio-described prime time or children’s programming per calendar quarter. As part of those hours, ABC selected The Shar Tank as one of their shows to provide audio description. WhooHoo! So, when I first heard about this a couple of years ago, I was very excited and it just enhanced my viewing pleasure. Now, I am really, really ignoring you on Friday night! When the show first comes on a voice is describing the shark swimming. I would get descriptions of the people coming in to the tank like what they look like, their dress, hair and eye color. Facial expressions would also be described and there is a lot of that going on in the tank as the entrepreneurs react to the investors. Eyes rolling, eyebrows furring, mouth dropping, grim looks or smiling faces. Sometimes if they are doing a demonstration as part of their pitch that would be described as well. Then the money and negotiation amounts would also be described.
Well, several months ago my description fell off, got disconnected or something. Not sure what happen but because I am a huge Shark Tank fan I still kept watching. I knew in the back of my mind I needed to get the description fix. I reached out to my local ABC affiliate, WSB-Atlanta, via email. I got a reply that my concern was being sent over to one of the engineers to investigate. I had to reach out to the close captioning contact for the deaf because there is no direct contact for the blind. This is an issue we talk about in the blind community all the time. But typically, the close captioning departments are familiar enough and can assist. In my case, I didn’t hear back. So, I tried again. Still no response. I called and left a message with no reply. So, a friend suggested to file a complaint with the Federal Communications Commission (FCC) and that did the job. I got a call from the chief engineer and we began to work on the problem. Over several phone and email conversations it was determined that the audio description signal was not reaching my TV for ABC. I was getting it for all my other stations like NBC, CBS and FOX meaning that it is working properly on my end. I got a sighted friend to come over twice to work with the engineer via phone. But as of this writing we have not found a solution yet. It seems that my TV has a setting separately for each station. Although we set it up for audio description it is still not working. The engineer and I are persevering and are hopeful that we will come to a resolution soon. But in the meantime, what am I going to do on Friday nights? You guessed it. Keep watching my Shark Tank!
The Audio Description Challenge
Here’s another challenge with audio description but this one is a cool and fun one I think you will enjoy. One of my fellow visually impaired blogging friends, Steph McCoy, loves audio description too. So much so, she helped launch Audio Description Awareness Day last year. She is promoting a challenge at her blog, Bold Blind Beauty. Here are the details: On April 16 2021 Bold Blind Beauty presents the Second Annual Audio Description Awareness Day and with it, kicks off the Audio Description Awareness Challenge, hashtag TADAChallenge. Here’s how it goes: Step one, find a friend to watch a TV episode or movie of your choice with audio description. Step two. At the end of the month, post your experience on social media and use the hashtag TADAChallenge which stands for The Audio Description Awareness Challenge.
Yes, you read it correct. I almost got scammed on LinkedIn by a job recruiter. In January I got an unsolicited email from a recruiter stating she had viewed my profile and I was a “great fit for an amazing opportunity.” She went on to say that they were looking for a person to fill a remote, work from home position as an administrative assistant. If I was interested all I had to do is reply and send my resume. After reading this initial email nothing stood out to me that was off. But before replying I did go on LinkedIn and look at her profile and from what I could gather it looked legit. So, I did reply and send my resume.
She responded back with more details about the position, including the start date, that it was part-time and a detailed list of work duties. She also indicated no interview was required and gave the weekly salary amount. Since this was a remote virtual assistant position, she talked about the software program I would use and that training would be provided. She told me that if I was still interested to please send an acceptance letter.
Expressed Concerns About Accessibility
I replied with interest but with a concern. I disclosed my disability and said I needed to talk with the technology department to be sure that the virtual software I would be using would be accessible with my screen reader. In her reply she didn’t address this but just restated I would get training. That is when my eyebrow began to raise. I have been blind for about 20 years using adaptive technology the entire time. Meaning, if a computer software program doesn’t work with my screen reader then I can’t use that software. It is not something to take lightly or dismiss. Those of us in the blind community deal with this all the time. We come across inaccessible websites, apps and computer programs. There are work arounds but we have to talk about it and figure things out. Yet I didn’t pick that up from the recruiter. I got the impression she just wanted to move forward.
She sent me an email giving more details about testing and equipment for the job. This is when the red flag was raised and I knew clearly this was a scam. In the message she asked me for my mailing address so a nearly $3,000 check could be sent to me. This check was to cover the purchase of my equipment and first week’s pay. I had heard about scams like this from listening to the Clark Howard Show, a local consumer advocate. I politely responded telling her I would have to decline the offer because I couldn’t get a clear answer on the accessibility of the software. I also went back to LinkedIn and her profile was mysteriously gone.
Reporting the Job Scam
Next, I went to LinkedIn to find a way to report the scam and had a hard time finding the info. Under the Help section, I came across this great article written by Biron Clark on how to spot and avoid job scams. After reading it I was looking for some kind of “report a scam” type button. I was disappointed that LinkedIn didn’t have it right there with the article. After discussing this issue with a friend, she helped me find the form to report the scam but it was in a location I wouldn’t have ever thought to look. It was in the “safety center.” I filled out the form and a representative contacted me rather quickly asking for more details, which I supplied. But once I asked for the findings and resolution, I was told that due to privacy I wouldn’t be allowed to know. This of course was disappointing but there was not much I could do about it. I left feeling a little taken advantage of and deflated. So, I decided to write this post and share with you as a warning and to help me reclaim some of my power.
As I started researching to write this post, I came across lots of articles on line about this topic. There were even ones specifically about job scams on LinkedIn. Apparently, this is a hot button issue especially with the coronavirus causing people to look for jobs and work remotely. Since I was already working from home beforehand, I was not paying close attention to all that was happening. But now I am! There is all kinds of tips and tricks on how to avoid job scams. So, I encourage you to read up on this so you can be safe. When I think of a scam it is usually financial, some kind of email or someone trying to hack into my computer. Or some phone scam like the IRS or Social Security calling. I had not considered job scams like a recruiter reaching out to me about a job that didn’t exist and for that matter neither did they.
Let’s discuss job scams. Have you ever delt with a job scam? If so, how did you handle it? Waht advice would you give to others to avoid scams like these?
Editor’s Note: Guest blogger, Amy Bovaird is a good friend and fellow peer advisor at VisionAware. We have been online friends for many years and lovers of the written word. Here is her story about living with low vision.
Everyday Misconceptions of Low Vision
Several years ago, my boyfriend’s housemate told him, “Amy can’t be blind, she makes eye contact with me.” In another situation, I was reading an excerpt from one of my books to members of a Rotary Club. Afterward one of the group members raised his hand and said, “You’re not really blind. How could you read that book?” Sometimes children come up to me and ask about why I use a white cane. When I explain, they often say, “But you don’t look blind!” One summer a Lions Club group sought out help to serve their famous BBQ at their fairground stand. I volunteered. Being a lion from another club, the leader took me on, albeit reluctantly. She put me at the end of an assembly line adding bread and butter to the plate.
Each of these situations perpetuate an inaccuracy or mistaken belief about blindness. I am legally blind but not completely blind. I am one of many who still has some useable vision, albeit not always stable or reliable. In fact, 15% of the people in the city where I live, Erie, Pennsylvania, struggles with some degree of sight loss. That is about 200,000 people. Many individuals never pick up a white cane. They simply manage the best they can, often keeping their loss to themselves. The amount of sight loss varies from person to person. It’s not liked a light switch, with one setting—on or off. Blind or sighted. There is a large continuum in between. That’s where meeting those with low vision often becomes cloudy. I want to clear up some of the confusion with you today.
February is Low Vision Awareness Month
February is both Low Vision Awareness Month and Retinitis Pigmentosa (RP) Awareness Month, making it the perfect time for me to share my story. I have Retinitis Pigmentosa, a rare, hereditary eye condition characterized by progressive sight loss. One in 4,000 people live with it. I first started to notice it in my late teens. My visual field narrowed and I had trouble in low light (at night or in darker environments). This progressed to tunnel vision, restricting vision more and more. It took me more than a decade before being diagnosed with RP. I was told I would “go blind.” In 1988, even specialists did not distinguish between low and / or no vision. Some of the challenges are similar and some are quite different. Both are manageable with the right mindset.
Addressing Misconceptions of Low Vision
Let’s revisit those situations I started off with in this blog post. I could still make eye contact with my boyfriend’s housemate because I still had my central vision, which was quite strong at that time. I had lost—or was in the process of losing—my peripheral or side vision. Others with low vision may also be able to appear as if they can make eye contact, even if they have lost some of their central vision, the reason being—our brain can “remember” and connect with people to make it look like one is making eye contact even if he or she cannot actually see the person’s eyes. So yes, legally blind people can make eye contact.
Now, sometimes when I tell the story of the gentleman from the rotary club who believed I was not really blind because I could still read print, I smile. The belief about blindness, or any ingrained stereotype, pervades. Earlier in my talk that day, I had explained to the group about how those with low vision had different degrees of sight loss, which met the “legally blind” criteria. After his comment, I showed him the Large Print book I read from. It was a size 18 font and said any smaller print would be indistinguishable. Sometimes it requires patience and reminders to others. People don’t see their perceptions as limiting or that they need to reframe them.
Since even children believe those who are blind look a certain way, this shows how deep the stereotype exists in our culture. The truth is there is no specific way a blind person “looks.” To teach this aspect to school children, I created a video called “The White Cane Song,” a collaborative effort by Melissa and Larry Beahm, a professional duo of singers, and me. It educates about the use of a white cane and also about the spectrum of sight. One of the lyrics reads “I have some degree of blindness. But I use my cane to help me through.” The video shows two young girls and me walking down the sidewalk with our white canes. Some friendly townspeople let us pass. The song has a catchy tune and demonstrates how children with sight loss can pursue hobbies. The children learn yoga in the video. It’s important to educate children to create an environment of empathy and inclusiveness in the school place.
The final example is harder to combat. It’s sometimes difficult to change the low expectation society places on those with low vision. I could easily manage the task given to me at the barbecue yet the leader came to me frequently to ask if I needed help. My role was to give them assistance. I learned from that experience to clearly communicate my abilities. This misunderstanding took place with a member of an organization tasked with “Being a beacon of light for the blind” by Helen Keller. It becomes imperative to share our truths, especially in an organization who provides support to the blind. We need to bridge understanding and build teams of outreach to teach others who know even less about sight loss. Like every other person, those with sight loss have skills, talents and natural abilities. We are more than able to contribute to society. I call myself “The low vision motivator with high expectations.” We have much to contribute to society and need to overcome that limitation in all social circles.
Living with Low Vision
So, what does life with low vision look like for me? I lead an active life. I am a teacher by trade, and a storyteller by nature. So, when my sight loss made managing a classroom too problematic, I decided to turn my hobby into a second career. It combines writing, educating and telling stories within two arenas – faith and sight loss. When I finally got past some of the fears being blind threw at me, I started writing about my slice-of-life situations. And I always found important life lessons. So, I share these in my memoirs and at my speaking engagements.
I now have come to terms with my five degrees of limited sight. With RP, this will decrease as my condition continues to deteriorate. However, I am optimistic about the quality of my life and I want to pass on that optimism with others.
The Six Factors of APPLY-G
6 factors have helped me maintain a positive outlook despite my unstable and unreliable vision. I call it hide-and-seek vision because it seems to be playing this game with me. Daily I remind myself to Apply-G because these factors are really ingredients in my personal sunscreen. They are: Attitude, Power, Patience, Laughter, Say Yes to Change, and Gratitude. When I add this sunscreen to my life, it prevents me from getting burned!
1. Attitude is an area of constant rephrasing for me. Being viewed as “accident-prone” because I couldn’t see something hurts my psyche. I once dropped a stack of text books on the floor thinking it was the edge of my teaching table. Live that one down! But I have learned to show kindness and empathy to myself and look at my situation in a more positive frame of mind—whether that means downplaying it, joking, explaining or establishing a life lesson.
2. Power comes with choice. Since I can’t control what my eyes show me, or what I can or can’t see in a given moment, I have to choose how to respond. Making that decision reminds me, ultimately, I am still in control. That feels good!
3. Patience has taught me to s-l-o-w down. Typically, I move fast. But since I can’t see well, it’s an accident waiting to happen. I am getting better at slowing my pace down. Also, patience teaches me I can still pursue my passions. For example, I am discovering I can do many of the same things I used to do, such as running and teaching if I am patient enough to adapt my style. Recently, Zoom has given me new opportunities to teach English. I have trouble moving around safely in a physical classroom—which was my style—but online, I can keep my active personality and still teach my students the tenets of English. It’s not quite the same, but I am back “in the driver’s seat!”
4. Laughter is healing, so I write and speak about mishaps. It helps me to enjoy my life, and makes me more approachable to others.
5. Say Yes to Change enables me to get out of the doldrums. I give myself permission to stop what I’m doing and choose another activity. I take a nap, call a friend, go for a run or write in my journal and I begin to feel better.
6. Gratitude is the secret substance to giving me my outlook.I keep a journal where I thank God for what he has done, or will do in my life, if I don’t see it happening now. I find gratitude reminds me to live in hope and joy. Gratitude is The. Key. Ingredient. It makes all the other elements flow smoothly. I love the picture this paints in my mind. I have only to recall the worst sunburn of my life when I sunbathed on a cloudy morning on the equator without any sunscreen. I didn’t think I needed it with the clouds covering the sun. The painful red as a lobster memory along with the visual to APPLY-G reminds me of the importance to Add sunscreen liberally.
Chat with and Learn More About Amy
It’s been wonderful to share my thoughts with you today. I would love to hear your comments and any questions you might have about Low Vision Awareness Month or my eye condition, Retinitis Pigmentosa.
Amy Bovaird is a freelance writer, ghostwriter, the author of the Mobility Series and the Finding Joy After … Series. She is the recipient of the “Distinguished Merit of Literature” by Ohio Valley University for her first memoir, Mobility Matters. A former ESL instructor, world traveler and inspirational speaker. She peppers her talks with faith, humor and culture. Amy is legally blind and losing her hearing. But she advocates living your best life, one rich in gratitude. Amy now lives in northwest Pennsylvania in the same house where she grew up. She strives for the upper hand with her three lively cats, and on most days, fails miserably. Learn more about Amy at her website.
This month is Black History Month and I am so excited to share about this phenomenal woman I learned about from the podcast called Encyclopedia Womannica. I have been a listener and subscriber for a long time now, at least 2 years, and every day I learn about some incredible woman and what she has done in the world. Well, this time the woman was Patricia E. Bath. Much like our US Vice President, Kamala Harris, Bath, was the first in many categories. Let me list them for you:
1. The first African-American to complete a residency in ophthalmology
2. the first Black woman to receive a medical patent
3. The first American woman to be named a chair of ophthalmology.
Bath’s Early Years
Obviously, being the first to open the door is no joke and I can imagine that it took a lot of courage, strength and tenacity to get there. But Bath also got her grit from her parents as well. She was born in Harlem in 1942. Her father was the first Black motorman for the New York City subway system; and her mother was a domestic worker. Both of her parents supported her curiosity about the world and interest in science. Her dad was a world traveler during his days as a merchant marine, which gave him colorful stories to share with his family. Bath was particularly intrigued with the story of Dr. Albert Schweitzer, a medical missionary, who dedicated his life to treating leprosy in the Congo. Her mother’s contribution was using the earnings from her job to purchase Bath’s first chemistry set.
In high school she was one of a few students selected to attend a cancer research workshop sponsored by the National Science Foundation. The head of the workshop was so impressed, he included her findings in a paper he presented at a conference. Bath completed high school in two years, and went straight to Hunter College where she graduated in 1964. Next, she attended Howard Medical School in Washington, D.C.
Bath Notices Differences in Care Between Blacks and Whites
Finished with her degrees, Bath accepted an internship back home, at Harlem Hospital. The succeeding year, she also began pursuing a fellowship in ophthalmology at Columbia University. While traveling between the hospital and the university, Bath noticed a stark difference in the number of blind or visually impaired patients at Harlem’s eye clinic compared to Columbia’s despite how close the two facilities were located to each other. The one notable difference was that Harlem’s patients were largely Black while Columbia’s were mainly white.
Drawing from her childhood curiosity, Bath led a retrospective epidemiological study. She found that blindness among the Black community was double that of whites. She concluded that high rates of blindness among African-Americans was largely due to the lack of access to care. She convinced physicians to offer surgeries at the Harlem clinic. And she proposed a new discipline called community ophthalmology. This new discipline combines elements of public health, community medicine and clinical ophthalmology to support underserved communities. Screenings were done for eye threatening conditions like glaucoma and cataracts. Volunteers were sent to senior centers and daycare facilities in the community. Children in need of glasses were identified early, giving them a better chance at school success. This discipline is still practiced worldwide today.
Bath Breaks Race and Gender Barriers
Bath began the final stage of her training at New York University In 1970. She broke a racial barrier by becoming the first African-American ophthalmology resident in American history. Shortly afterward she married a fellow physician and they had a daughter. A couple of years later Bath and her family relocated out west to California where she broke another barrier by becoming the first woman faculty member in UCLA’s Ophthalmology department. When she was hired, she was offered an office in the basement next to the lab animals. Instead of accusing her employer of discrimination Bath worked on getting more appropriate office space. By 1983, Bath was the chair of the department, and breaking yet another barrier by becoming the first woman in the US to hold that position.
Bath Invents Device to Remove cataracts
Bath believed that eyesight was a human right so in 1977, she and several colleagues created the American Institute for the Prevention of Blindness. They traveled around the world training volunteers, teaching, speaking and experiencing different cultures. During her travels, the most common cause of blindness she saw was cataracts. So, she decided to do something about it and in 1981 she invented a new device and method for treatment called the laserphaco probe. The probe is a fiber optic laser surrounded by irrigation and suction tubes. It lets surgeons to remove cataracts in a matter of minutes. Not only was the process quickly sped up, but it minimized the patient’s pain.
During this time, Bath’s concept outpaced current technology. She spent almost five years conducting research, trials and development work. In 1988, Bath broke another barrier becoming the first Black woman doctor to receive a patent. Today, the probe is frequently used around the world, and revolutionized the way cataracts are treated. Bath used her device personally restoring vision to several people who’d been blind for over 30 years. But in 1993, she retired from her position at UCLA to focus on telemedicine. She held positions in telemedicine at her alma mater, Howard University, and at St. George’s University in Grenada. In 2001, she was appointed to the International Women in Medicine Hall of Fame. Bath died on May 30, 2019, from complications with cancer. She was 76 years old.
Today is the day that many people across the country are casting their ballot for our president and other government officials. In the past, I would have been doing the same thing at my local precinct. But not this year! It is way, way too much going on and if you have been watching even a little bit of the news you know exactly what I am talking about. All kinds of problems real or imagined with our postal service. Extremely long lines and wait times to vote. All kinds of misinformation shared online and social media and the list goes on and on. So, this year I decided to bypass some of the stress and craziness and vote early in person. I am so glad I did because my experience was good. There were some problems with the audio quality of the machines which I will share in a moment but overall, I had a fairly pleasant time.
initially I was not sure which approach I was going to take; whether to vote absentee or vote in person. So, I requested my absentee ballot way in advance and had it weeks early; like back in the first of October. I wasn’t concerned about mailing it back because I knew that I would either carry it to a local drop box in my neighborhood or to my local precinct. But then I began to reflect on the lack of accessibility of the whole process to vote absentee. I would have to get a sighted person to fill out my ballot for me which also mint lack of privacy. I also thought about my signature matching with the one on my state ID. Well, I can’t see that and trying to write my signature exactly the same after 20 years of blindness is a bit much! I just didn’t want to run the risk of my ballot being considered spoiled and thrown out on a technicality. Also, it was that issue during the primary when I voted absentee of the missing internal envelope. An explanation was given by the DeKalb County Voter Registration Office but I know how important it is to follow instructions exactly as written or your ballot could be thrown out. So, to alleviate my stress and worry I just voted early and in person.
Early voting in my area started on October 12th and lasted until the 30th. The first
few days, yes, the lines were long but I expected that. So, I waited about a week and went the following Monday on the 19th. I also wanted to do some more research on the candidates and amendments. Next, I made my transportation arrangements. I prepared for long lines by packing a snack and bottled water, brought my own folding chair and wore comfortable clothing and my Dr. Scholl’s tennis shoes. And, yes, let’s not forget my facemask and gloves! I had even read up on the Centers for Disease Control’s recommendations for voting. I also brought my absentee ballot to return so they could know that I was not trying to vote twice.
Once I arrived, I got set up and a poll worker walked me over to the accessible voting machine. I began to vote and that is where the problems started. The audio quality was awful again. I have talked about this here on the blog. I have shared this problem with friends and family. When I participated in a research consulting project with Georgia Tech on accessible voting machines, I stressed this point. I have filed complaints with the Georgia Secretary of State Office on this. In other words, I am a broken record and will continue to be until this issue is resolved. I just don’t understand with our advanced technology in speech output that when I go to vote, which is one of the most important things I can do in life, the machine sounds like your grandaddy’s old transistor radio from back in the day. Not only was the audio quality bad but it kept fading in and out. The poll worker came over several times to adjust the cord. He was talking to me like a Metro PC commercial, “Can you hear me now? Can you hear me now?” I even thought that if I placed the keypad on the desk and didn’t move it that would help but when I got to the portion to review my ballot the whole thing went out again. The poll worker came back and got it talking. I was able to finish and print out my ballot. I just can’t believe that the state of Georgia spent thousands of dollars on these brand-new machines and they don’t work any better than the old ones the blind community complained about in the past. I did file yet another complaint with the Secretary of State Office for what it’s worth.
Next the poll worker escorted me to the other machine to cast my ballot. There I placed the print out on the machine and waited to hear it click. Afterward I went outside to take my photo that I had voted and waited on my transportation. As I sat and waited, I observed people coming in and out but no long lines. The poll worker told me that the precinct had about 30 machines and things were flowing fairly smoothly. He said there were long lines at the beginning and early in the morning but that was decreasing. It was even nice to see a couple of new voters because announcements were made and everyone clapped and cheered when they cast their ballot. As I listened, I reflected on the first time I voted for the President many years ago. I was a college student and it was a good feeling for me too.
The fall is my favorite season and time of the year. The weather is cooler. The autumn colors of brown, orange, golden yellow, dark red and green are on display. October is the month when all of this jumps off. But one other thing I recently noticed is the number of blind and disabled observations happening at this time too. Not sure why this is the case but I couldn’t let another day go by without pointing them out. Or at least the ones I know about.
1. World Sight Day is held on the second Thursday of October every year and aims to focus global attention on vision impairment and blindness. There is a different theme every year, with many of those who mark the Day taking the opportunity to both celebrate achievements to date and advocate for increasing attention towards eye care. According to the World Health Organization 1 billion people around the world have a preventable vision impairment or one that has yet to be addressed. Reduced or absent eyesight can have major and long-lasting effects on all aspects of life, including daily personal activities, interacting with the community, school and work opportunities and the ability to access public services.
2. White Cane Safety Day is observed nationally on October 15th. It was a law passed to protect white cane pedestrians by giving them the right of way and recognizing that the white cane was a symbol of blindness. President Lyndon Johnson signed it into law in 1964.
3. Blind Americans Equality Day. In 2011, White Cane Safety Day was also named Blind Americans Equality Day by President Barack Obama. The mission is to celebrate the continuing achievements of blind and visually impaired Americans and reaffirm the commitment to advancing their complete social and economic integration.
4. Meet the Blind Month is hosted by the National Federation of the Blind every October. Throughout the month, members conduct a variety of outreach activities in their local communities. Many of these activities focus on White Cane Awareness Day, lived experiences with problem solving, self-confidence and intersectionality.
5. National Disability Employment Awareness Month acknowledges the ingenuity people with disabilities bring to America’s workplaces. Each October NDEAM celebrates America’s workers with disabilities and reminds employers of the importance of inclusive hiring practices. In 1945, Congress declared the first week of October “National Employ the Physically Handicapped Week.” In 1962, the word “physically” was dropped to include individuals with all types of disabilities. Congress expanded the week to a month in 1988, and changed the commemoration to National Disability Employment Awareness Month.
6. Blind Awareness Month was created by The Little Rock Foundation in Voorhees, New Jersey to promote improving blind and visually impaired children’s lives. The goal is to educate the public about good eye health, and treatment of eye disorders. Inspire people with stories of the blind and their accomplishments. Advocate for research, resources and laws that benefit the blind community.
After doing my research I would dare to say that October is the month of the blind. I would encourage you to take some time and learn more, volunteer or donate to an organization serving the blind community.