OE Patients

Category: Voices of Experience

Podcasts, interviews and profiles from experience both personal and professional.

  • Toyota Spotlights Visually Impaired Athlete

    Toyota Spotlights Visually Impaired Athlete

    The story depicted in “Brothers,” a 60-second Toyota ad created to air during the 2022 Super Bowl and the Beijing Olympics, is based on the real lives of Brian and Robin McKeever. It opens with Robin teaching his younger brother to ski with glee. Growing up in Calgary, Canada, they develop a love for cross-country skiing and as their skills and training advance, they are preparing to compete with the best skiers in the world.

    The tenor suddenly changes, and the video image becomes blurry in the center. There is a close-up of his eye, then his face, and we hear a doctor say, “Brian, we have found that you have a condition known as Stargardt macular degeneration. At this time, there is no treatment.” Upon diagnosis he is 19 years old, but his athletic career is far from finished. 

    The brothers continue training together, Robin providing his brother with vocal guidance. The work they do will take Robin to the Olympics, and both to the Paralympic Winter Games, with Robin as Brian’s guide. As Brian’s central vision loss progressed, the McKeever brothers competed together at the 2002, 2006 and 2010 Para Games, winning 10 medals. Brian has won 17 Paralympic medals, 13 are gold, making him the most decorated Para cross-country skier, ever. He is currently training for the Beijing Paralympics in March.

    In a press release Toyota said the ad “shares an inspiring message of determination and spotlights the power of sport.” It is also a testament to the power of support. “I hope my story inspires viewers to start their impossible – whatever that might be,” said Brian McKeever. “I’ve learned firsthand that anything is possible with perseverance, and the support of a brother, like Robin.” Vision loss is not completely new to Brian’s family, his father is also affected by Stargardt Disease, as is his aunt. Having this point of reference and a positive role model, in time, helps him accept the diagnosis and understand the long game. “Looking back, those things that maybe did change are just tiny barriers compared to the big picture,” Brian says. “I’m losing my eyesight, and that’s a big challenge. But the reality is, once you start to look at how to move forward, the things that seemed like a big deal at the start ended up being inconsequential.”

    Thanks to Brian, Robin and Toyota for reminding us of what is possible.

    https://www.youtube.com/watch?v=x_UgHZdjgvQ

    Watch the Toyota Ad featuring the McKeever Brothers story

  • Inspiring Stories of People Thriving With Vision Loss

    Inspiring Stories of People Thriving With Vision Loss

    We love to share stories of people succeeding with vision loss, at every age and stage of life. It reminds us all that there is no limit to what is possible. Each story has the power to inspire so many more to find the potential in perseverance. Read on to meet the artists, athletes, writers, filmmaker, judge and restaurateur who have flourished. There is a common thread that runs through these stories, vision lost and perspective gained.

    Rachel Christian says working remotely is a game changer for people with vision loss.
    Rachel Christian says working remotely is a game changer for people with vision loss.

    Rachel Christian, Journalist

    Rachel, a personal finance writer who is legally blind from cone dystrophy, finds working from home is profoundly empowering. She has control of her work environment, does not feel self-conscious around coworkers and she does not have to deal with the transportation hurdles inherent for visually impaired commuters. It’s a game changer.

    Here’s Why Working From Home Works for Rachel

    Issac Lidsky, Author

    Most of his sight was lost, by the age of 25, to retinitis pigmentosa. In the process he discovered that fear can be much more debilitating than vision loss. In his memoir, Eyes Wide Open, he discovered blindness could be overcome by letting go of overarching anxiety and inhibitions. Isaac says, “I’ve gained vision by losing my sight.” 

     More on Issac’s Enlightenment in “Don’t Be Blinded By Fear”

    Alexandra Joy Crocco, Photographer 

    She has a white cane in one hand and a camera in the other, which can be a confusing sight, but that just goes to show you can have an eye for photography without having good eyesight. Alexandra’s multiple vision problems are caused by albinism, and although she can’t see a lot of detail she has proven her ability to capture the special moments her clients treasure.   

    Here’s how Alexandra Achieves Career Milestone

    Lynda Lambert wearing her jewelry design.
    Lynda Lambert wearing her jewelry design.

    Lynda McKinney Lambert, Artist 

    A retired professor of fine arts and humanities has not let vision loss stop her from creating award winning art. Her vision loss resulting from ischemic optic neuropathy precipitated a new life, that for her had to remain centered in art. 

    Read Lynda’s story, Creative Vision: Blind Artist Earns Another Award

    Lily Mitchell, Filmmaker and Athlete

    She is determined to let nothing get in her way and looks forward to helping make the film business more accessible for people who are differently abled while helping to dispel the perpetuation of stereotypes. Lily is legally blind from cone rod dystrophy, a condition she was diagnosed with at the age of 11. 

    More on Lily’s Experience in Filmaking and Para Sports

    DC Circuit Judge David Tatel
    DC Circuit Judge David Tatel

    He has served on the United States Court of Appeal since 1994. Along every step of that way, he dealt with progressive vision loss, from retinitis pigmentosa, and found the resources he needed to succeed.  

    Listen to Life, Law and Vision Loss on Hadley Presents

    Gia Pergolini, Athlete

    Legal blindness from, Stargardt Disease, would not deter this world-class athlete. She set her sights on gold and took it in the 100 meter backstroke at the Tokyo Paralympics. At 17, she is inspiring people of every age to achieve their goals.

    Read “Gia Pergolini is a Champion”

    Ben Benson, Restaurateur 

    Legally blind from the age of 18, he built a storied career in New York City’s legendary restaurant business, beginning with the creation of the first Friday’s location, which would become an internationally recognized chain.

    Liston to Ben’s Extraordinary New York Success Story

    Frank Bruni, Journalist, Author and Professor 

    He entered the realm of vision loss, without warning, in 2017 as he awoke to a forever changed view caused by a stroke of the eye. Now a Duke University professor, he continues to communicate with readers through The New York Times and is about to publish his tenth book, The Beauty of Dusk: On Vision Lost and Found.

    Read The Frankness of Bruni

    Monet, da Vinci, Degas, O’Keefe, Renoir, Rembrandt, Artists

    Thanks to Perkins Learning for this enlightening article on the array of visual impairments that affected the most renowned artists in history. Vision loss did not hinder, in many cases it actually enhanced their work. 

    Ten Ways Vision Impairment Influenced Classic Artists 

  • At 90, Edythe Gets Her iPad

    At 90, Edythe Gets Her iPad

     

    In the early summer of 2013, Edythe Heyman came to my office, at the Lighthouse in New York, for a scheduled technology consultation. Diagnosed with macular degeneration in her 60’s, she had been legally blind for many years, and was then just months from her 90th birthday. With vision loss progressing, and no treatment or correction in sight, Edythe was referred to me, by her retina specialist, to explore the ways she might use an iPad. Seeking solutions to compensate for vision loss, she was particularly interested in finding ways she could continue reading The New York Times. I well understood the proposition, it was among the top requests from low vision patients and a loss I had experienced myself. 

    Although she did not use a personal computer, Edythe was not new to assistive technology. She utilized a video magnifier to read mail, for example, but it was not conducive to reading a newspaper.  She adopted an early version of the OrCam reader, but that too, proved to be less than optimal for reading the news. She was able, however, to satisfy her love of books, by switching to audiobooks, with a subscription to the National Library Service Talking Books program, early on.  

    At our first meeting, I demonstrated how Apple’s iOS devices used the VoiceOver screen reader to turn text to speech. We explored the ways Edythe might use an iPad to read The New York Times, read e-Books, audiobooks, and communicate by email, all by mobile apps.  She was anxious to give it a try, and we gave her the opportunity to navigate the touch screen, trying out some of the VoiceOver  gestures that give the iPad (and iPhone) a voice. She also got to try out some of the Siri voice commands and very quickly became interested to get started learning. I provided the details she would need to buy her iPad at the Apple Store and get it set up properly andWe reviewed how the training would be structured. I then cautioned Edythe, as I did everyone about to embark on the VoiceOver learning experience, “It will not be easy. You must be willing to work at it. Practice, on a daily basis, is essential for success. It will be frustrating at times, but soon it will become second nature. Learning VoiceOver is well worth the effort and it will change your life!” 

    A fair number of my potential students left  with the iPad or iPhone buying instructions in hand, and the cautionary words echoing in their head, never to be heard from again. Edythe Heyman returned one week later, with her new iPad, all set up and ready to go. She was able to accomplish her goal of reading her favorite newspaper again, everyday, with efficiency and with joy. She learned to communicate with family and friends by email, using a combination of Siri and VoiceOver, and she delighted in saving photos sent by family to her iPad Photos app.

     

    Photo of Edythe Heyman at age 92
    Photo of Edythe Heyman at age 92
    Image Credit: Lighthouse Guild

     

    Edythe was not only there to learn, she was also there to teach us. A Lighthouse Guild Vision+Health publication from 2015 states, “At 92 years old, Edythe Heyman proves that there is no age barrier to learning new technology. No longer able to read standard print, she has embraced accessible technology to help her stay informed and in touch.  ‘One of my great pleasures was taking The New York Times with me to the breakfast table and reading it. I can’t do that anymore,’ says Edythe, ‘Now I can access The New York Times app, listen to the latest books and use email.’

    Edythe Heyman passed away, at age 98, on December 1, 2021. The New York Times obituary in her memory ended with, “Edythe’s friends are asked simply to remember her.” She was a friend of mine and a generous supporter of the Association for Macular Diseases, OE Patients, Lighthouse Guild and many other organizations. She was an inspiration and she will be missed. 

     

  • Asking for Help is a Strength

    Asking for Help is a Strength

    The ability to ask for help does not come naturally to everyone, not even to everyone with a visual impairment. For many it is an acquired skill and definitely worth learning. Not wanting to ask for help may be viewed as a strength, but it is quite likely the complete opposite. Life with a visual impairment often causes us to look at things slightly askew, and this is definitely one of those things.  So let’s take a good closeup look together and decide what is really in our best interest.

    It’s good to hear from other voices of experience on the issues that challenge us.  Here is a small collection of excerpts from experts, on this recurring topic, and if you appreciate their perspectives, you’ll find more at the links where these quotes came from.

    Image of Jenny Lay-Flurrie
    Image of Jenny Lay-Flurrie

    Jenny Lay-Flurrie

    The Chief Accessibility Officer at Microsoft puts her professional energy to work every day advocating for people with disabilities. In a Microsoft video she makes a statement worth remembering, informed by her own experience living with progressive hearing loss.

    Jenny said, “If you are going to be successful, as a person with a disability, you’re going to have to be able to ask for help and it took me a long time to wake up and realize that. But once I did, game on!”

    Image of Rebecca Alexad
    Image of Rebecca Alexander

    Rebecca Alexander

    A psychotherapist, author and extreme athlete who lives with hearing and vision loss from Usher’s Syndrome. In this AFB Centennial Conversation she  discussed The Power of Gratitude and Joy, in which she too empowers us to ask for help.

    Rebecca advises creating a foundation of support, from people you can rely on to do things with you, not for you. “Challenge yourself,” she says, “this is where the self advocacy comes in.” She believes, asking for help is good for both the person giving, and the person getting, the help. “I think that when we engender that in other people by asking for help, we actually allow them to feel a sense of fulfillment, of knowing that they matter.“

    Image of Hannah Fairbairn
    Image of Hannah Fairbairn

    Hannah Fairbairn

    The author, former chef and retired teacher of the visually impaired, is guest on the Hadley Presents Podcast to discuss, Becoming Socially Confident After Vision Loss.

    Hannah points out how we can help others help us in social situations by practicing effective communication. She advises, for example, when you go to a store or a medical appointment, you need to mention, calmly and confidently, that you have a visual impairment and explain what help you need. “Then this is the tricky bit, this is the bit you’re going to practice, you are going to coach your helper in how to do it because you may very well be the first person with vision loss they’ve ever met.”  You might say things like…Can I follow you to the door? Are there any steps? Can you show me where the restrooms are?  Will you push the elevator button?“ So that’s what you do in those kinds of situations, you want to start there, start where people are paid to help others…that’s a good place to practice.”

    Image of Jaydan Mitchell
    Image of Jaydan Mitchell

    Jaydan Mitchell

    The Vision Coach and founder of Core Visionary Coaching was our guest on Episode 17 of the OE Patients Podcast: Working With A Vision Coach.  Asking for help naturally appeared in our discussion of Mindsets & Beliefs, “I’m not helpless because I ask for help” is one we consider.

    Jaydan suggests “thinking about asking for help as something you choose to do, not something you have to do. It’s okay to not always ask for help, but asking for help is something you get to choose to do if you need it.” He says, “I think we often get caught up in the belief that if I’m asking for help, people are going to think that I’m helpless.”  “The reality of this thought process is, everyone is asking for help from time to time, regardless of visual acuity, and most people are very happy to help others.” And don’t hesitate to request some help from a customer service representative or a sales associate, your request is not a bother, they are there to help.

    Asking for help does not mean giving up control, in fact it’s really about taking back control. The more you practice the more natural it becomes.  As Michelle Milgrim, wellness expert, tells us in Prioritize Your Emotional Health, “Recognizing when you need help is a strength.”

  • Episode 17: Working With A Vision Coach

    Episode 17: Working With A Vision Coach

    If you’re feeling stuck or stalled by vision loss, it’s time to regroup. OE host, Dorrie Rush discusses the process with Vision Coach, Jaydan Mitchell.

    Time Stamp & Show Notes:

    0:17 Introduction to Jaydan Mitchell
    1:32 What is a vision coach?
    6:51 When to consult a Vision Coach?
    9:08 What to expect?
    12:11 How does coaching differ from vision rehab?
    15:02 How does the coaching process get started?
    18:24 Six Mindsets & Beliefs
    21:06 I have the right to say it out loud.
    26:26 I don’t have to apologize.
    29:51 I can do it my way.
    36:39 I get to try new things.
    41:41 I’m not helpless because I ask for help.
    44:58 I can be happy, fulfilled and productive.

    Jaydan Mitchell also shared his perspectives on:
    Episode 4: Must Know Info About Adjusting to Low Vision
    Episode 10: WFH – Work From Home

    Contact Jaydan Mitchell
    Online: corevisionary.com
    email: [email protected]

     

    Full Playlist:

  • Episode 16: Why iPhone?

    Episode 16: Why iPhone?

    iPhone is the most commonly used device among people with vision loss, here’s why.

    Time Stamp & Show Notes:

    1:18 Beginnings of iPhone Accessibility
    3:40 What is Accessibility?
    6:30 Basics for vision Settings
    Switching To iPhone? Here’s A Guide
    9:46 Magnifier
    Using the iPhone Magnifier
    12:00 Flashlight
    12:47 Spoken Content
    14:10 VoiceOver Screen Reader
    VoiceOver Speaks To You
    17:16 Contacts
    19:33 Siri
    10 Things Siri Will Do If You Ask
    23:08 Dictation
    Are You A Dictator?
    25:39 Apps
    “Seeing AI” Is A Gift From Microsoft
    29:30 Support & Learning
    Apple Accessibility Support: 877-204-3930
    Meet Hadley 2.0, Your Personal Tutor

    Full Playlist:

  • Episode 15: Low Vision Tips & Advice for Home

    Episode 15: Low Vision Tips & Advice for Home

    Small changes and practical advice are the keys to living better with low vision. In this episode, we focus on staying organized and productive at home.
    Time Stamp & Show Notes: 
    0:34 Definition of Low Vision?
    2:08 Knowing how to adjust is key.
    5:45 Keeping things organized.
    6:25 Everything has it’s place.
    9:00 Organizing kitchen and closets.
    9:46 Utilizing contrast.
    14:00 Tips for TV watching.
    17:06 Writing tips.
    19:38 Banking and bill paying.
    21:50 Reading.
    22:59 Lighting.
    24:53 Magnifiers.
    29:00 Adjusting takes patience & practice.

    Full Playlist:

  • Episode 14: The Retina Counselor

    Episode 14: The Retina Counselor

    Dr. Mrinali Gupta talks about the Retina Counselor reports, published on OE, and how patients can best utilize the information provided on treatments in development for age-related macular degeneration and diabetic eye diseases.

    Show Notes:
    Retina Counselor – Age-Related Macular Degeneration
    Retina Counselor – Diabetic Eye Diseases

    Time Stamp:
    0:59 Introduction to Dr. Mrinali Gupta
    1:57 What is the Retina Counselor?
    4:22 How is wet AMD treated?
    7:24 Developing treatments for dry AMD.
    9:25 Developing treatments for diabetic eye diseases.
    13:52 How can patients best utilize the information?

    Full Playlist:

  • Episode 13: Participation in Clinical Trials for Vision Research

    Episode 13: Participation in Clinical Trials for Vision Research

    A must-listen for everyone interested in clinical trials. Dr. Avni Finn takes us inside the process and thoughtfully provides the detailed guidance every patient needs to know.
    Show Notes:
    Time Stamps:
    1:22 Introduction tot Dr. Avni Finn.
    3:12 What is a clinical trial?
    4:56 Four phases of a clinical trial.
    10:18 The best resources for clinical trials.
    13:01 How is eligibility determined?
    15:54 What compels patients to participate?
    17:51 Questions patients should ask in advance.
    22:33 What is Informed Consent?
    26:42 Should patients expect to incur expenses?

    Full Playlist:

  • Episode 12: The Hottest Low Vision Gifts

    Episode 12: The Hottest Low Vision Gifts

    The low vision gift guide is one of OE’s most popular webpages of the year.  Get the inside scoop as host Dorrie Rush presents the very best things to give or get.
    Show Notes: 
    Details & gift list on OE: The Hottest Low Vision Gifts 2020
    Subscribe to OE Monthly Email Roundup: OEPatients.org/signup
    OE Patients Podcast Episode 3: Hadley’s Douglas Walker
    OE Patients Podcast Episode 1: Siri, Google & Alexa

    Full Playlist:

  • Episode 11: What Every Patient Should Know About Their Smartphones & Tablets

    Episode 11: What Every Patient Should Know About Their Smartphones & Tablets

    In this conversation Dorrie Rush and Carol Yaple discuss what every patient, and their physicians, should know about the life-changing visual accessibility options in every smartphone and tablet.






    Show Notes:





    Full Playlist:

  • Episode 10: WFH – Work From Home

    Episode 10: WFH – Work From Home

    Making work from home work for you, with Dorrie Rush, Jane Breheney and Jaydan Mitchell.

    Full Playlist: