They mean well, of course they do, but when it comes to asking a family member for technical support or help learning a new skill, things can quickly go sideways. What starts as a loving gesture, often turns into a test of your patience, and theirs. There is no need to blame age or ability for what seems to be an emotionally charged exchange with the geek you love. It’s all about family dynamics, which is why tech support is best delivered by a qualified non-relative.
Here are some tech support and training resources specifically helpful for older adults.
Senior Planet from AARP – call hotline at 888-713-3495 for answers to troubleshoot tech related questions. Learn about their free, online and in-person classes for older adults. Topics covered include computer basics, internet navigation, social media, using smartphones and tablets. They also offer classes on specific apps, online safety, and using technology to manage health and finances. SeniorPlanet.org
Public Library – More and more libraries are offering free tech support and training programs. They may have regularly scheduled classes and even individualized help administered by qualified volunteers. Contact your local library today and inquire.
Apple – The Apple Stores offer free personal setup, numerous workshops scheduled daily, Genius Bar to help you solve issues or fix problems, and Accessibility Support 24/7 by phone at 877.204.3930 for people with visual, hearing, learning and physical impairments.
HadleyHelps.org offers an impressive series of video tutorials, for adults with vision loss, on Android, Apple, Computer Skills, Books & TV, Alexa and Zoom. If you have questions, reach out to Hadley by phone at 800-323-4238, or email [email protected].
Microsoft’s Disability Answer Desk at 800.936.5900 provides free technical support to customers with vision or hearing impairments and other disabilities, on Microsoft products and accessibility features. This includes assistance with Windows, Office, Xbox, and adaptive accessories.
Community and Senior Centers – are offering more in the way of technology support and training, as well. Contact your local center and ask about their programs. In this setting, you’ll be learning from and with your peers.
Before you begin to expand your horizons, here are a few tips that can help you ease into the learning process with realistic expectations.
Focus on learning one thing at a time. Classes and workshops may cover more elements than you can absorb in one session. Be happy to learn a couple of new things each time and come back for the rest later.
Know the key to successful learning is rooted in repetition. You don’t learn to do something on the first try. Repeat it 20 times and suddenly you are the master. Learning to navigate a touch screen is mostly about how many times you touch that screen every day. After a while, it’s just second nature — ingrained in your sense memory.
A learning curve causes discomfort across the entire spectrum of age, whether your eyesight is good, or not. Keep things in perspective by allowing yourself credit for your successes.
Post originally published September 1, 2017 and updated June 13, 2025
When the thought of doing something different or learning something new is daunting, think small. Breaking down changes into mini or bite-size increments is an easier route to long-term success. Implementing this concept for adjusting to progressive vision loss, or low vision, is tried and true. Let’s explore ways to get things done in minutes instead of hours. Breaking up monotony and boosting efficiency will help restore our sense of stability.
Woman looks at her thumb and index finger making symbol for small
The One Minute Rule
An easy and effective way to keep your home or office in order. Don’t put off anything you can do in 1 minute. Hang up clothes, fold laundry, answer an email or pay a bill. Don’t think too much about it, just do it. It becomes habitual, in a good way. And, no need to time yourself, the one-minute rule works beautifully even if it takes 2 or 3 minutes.
Ten Minute Rule
Tackle a time-consuming task or project in 10-minute sessions. Organize the kitchen, one drawer, or one cabinet at a time. Clean a closet in small sections, place an order online or check in with a friend. It’s perfectly fine if it takes 15 or 20, the goal is to get things done.
Micro Learning
The pandemic also showed us the essential nature of technology. It would be hard to imagine independence without it. In terms of manageability, micro-learning is the way to go. That means advancing your ability one skill at a time. No need to put that off or wait for it to be developed, it’s already available whenever you want it 24/7 at HadleyHelps.org and at these Accessibility Support Phone Lines. Devote a few minutes a week to improving your tech ability.
Exercise Snacks
Recharge with a few minutes of exercise several times a day. No need to change your clothes. Can be indoors or out. Grab some weights or exercise bands. Do jumping jacks, squats, or wall push-ups. Put on some music and dance or just run in place. Make it your own or try something like this: The Standing 7- Minute Workout. More about these healthy snacks from Cleveland Clinic.
Thinking small is ultimately a better way to think big!
Post originally published Jan 22, 2021 and updated Feb 22, 2024
It is a great pleasure to attend a world-wide conference dedicated to developments in accessible technologies for people who are visually impaired or blind. Quite possibly the most inclusive conference you’ll ever attend because it’s literally open to everyone. There is no registration fee, no travel expense, no airports or hotels to navigate. The venue is virtual, so you can attend whenever you wish, selectively and on-demand.
The annual Sight Tech Global Conference is a production of the Vista Center for the Blind and Visually Impaired, founded and executive produced by Ned Desmond. The conference is beautifully accessible. Browse the 2023 Agenda and select the sessions of interest to you and click to watch. Right below the 2023 Agenda, you can even select past conference agendas starting with 2020, it’s all there, a complete reference. This year, it came as no surprise, Artificial Intelligence (AI) dominated the conversations. Speakers talked about how AI influenced and improved their products. They discussed the upsides and the downsides of AI, the magnificence and the maleficence. They shared their hopes and dreams and they marveled at how fast it is moving. How far it can go, no one really seems to know.
Here are some highlights from Sight Tech Global 2023:
Where will AI take accessibility? A conversation with Mike Shebanek – As the Head of Accessibility at META, Mike shares his unique perspective on inclusivity with an emphasis on universal design. Sounds like we can look forward to, accessibility out-of-the-box for, the META Quest 3 AV/VR headset and the Ray Ban META smart glasses.
Andrew Leland on his instant classic, “The Country of the Blind” – The interview, moderated by Daryl Adams, of intel, is more of a sweet conversation between two people with the common experience of progressively losing sight to retinitis pigmentosa. Andrew Leland describes the ambiguity many experience in adjusting when you are “too blind to be sighted and too sighted to be blind.”
Waymo in San Francisco: A lesson in public advocacy for AI – It’s wonderful to learn of the driverless taxi service now operating in San Francisco by Waymo, thanks to the advocacy and partnership of the local Lighthouse and NFB organizations. This might be coming to a city near you.
Why did the AI cross the street? The OKO app story – Learn from co-founder, Michiel Janssen, how, where and why this innovative app was created to help people with vision loss make crosswalks accessible.
Man reading restaurant menu options to his dinner companion
One of the most frequently asked questions from people living with low vision is: How do you read the restaurant menu? There are many good options for accomplishing this task depending on the degree of visual impairment.
This is all about making adjustments, and accepting that picking up a menu and reading it the way you once did, may not be something you can reenact. Keep in mind, the goal is to select food you will enjoy, not to read every dish on the menu.
Here are some of the ways we can successfully overcome the challenges of menu reading and return to savoring the culinary and social experience.
Flashlights & Magnifiers – It is not at all unusual to see people in dimly lit restaurants pull out their mobile phone flashlight and point it at the menu. The same goes for magnifiers, sometimes on the phone, sometimes on their own with the light built in. So no need to feel weird — everybody’s doing it.
Online Menu – Making a menu selection in advance will allow you to relax. Google search “menu” + the restaurant name to review choices. (With iPhone use Speak Screen or VoiceOver to read the menu aloud, on larger screens increase the text size.)
Ask – It is perfectly fine to ask a companion to read some sections from the menu to you, but try to ask for specific categories like, “What are the salads or soups?” Also, ask if there is a large print menu.
Specials – Asking the wait staff to read you the menu is not realistic, but do ask for the specials of the day or for their recommendations in specific categories.
Seeing AI – The popular iPhone app from Microsoft has Short Text and Document channels that can be useful for menu reading. A recent update to the Document channel (version 5.2) takes a picture of the menu and reads it back or allows you to ask questions like, “What are the seafood options?” Seeing AI Gets Upgrade
The QR Code Menu — When it’s available, use your mobile phone to scan the code and the menu is instantly available on your screen. Make it a talking menu using accessibility speech features like VoiceOver and Speak Screen in iOS, or TalkBack and Select to Speak in Android. Listen to the menu options privately with your ear buds.
In essence, finding a new approach to reading menus will get you back to enjoying the food, the company, the conversation, and the atmosphere. It’s even okay to just say, “I’ll have what she’s having.”
This article was originally published January 24, 2018 and last updated Oct 20, 2023.
Vision loss is an element of aging, but that is not to say it is out of our control. To what degree we experience changes in eyesight actually has a good deal to do with nutrition and lifestyle. It is really never too soon to begin taking care of your eyes. Starting young and developing good habits can help maintain visual function for the long term. No matter where you’re at in life, thinking about preserving your precious sight should compel action. Here are 5 good habits that can counteract the degenerating aspects of aging on the eyes.
Ripe tomatoes with fresh basil, garlic, and herbs.
Eat right and save sight.
Enjoy a nutrient-rich diet, emphasizing fish high in omega-3, a colorful assortment of whole fruits and veggies, along with plenty of citrus and lots of leafy greens, legumes, olive oil, nuts and grains.
The Mediterranean diet is known to keep the heart and brain in peak condition and to lower the cancer risk. A new study shows it can also significantly lessen the long-term effects of age-related macular degeneration. Read more about the study from American Academy of Ophthalmology (AAO).
Prevent sun damage and injury to your eyes.
The importance of shielding eyes from the damaging rays of the sun cannot be overstated. Be sure your sunglasses block out at least 99% of UV rays. Wear safety goggles or protective glasses when engaged in sports or when working with hazardous and airborne materials. Read our 10 tips on keeping your eyes protected.
Don’t smoke.
Smoking is the most common factor in developing macular degeneration. It also contributes to cataracts and damage to the optic nerve. Smoking causes vasoconstriction, which restricts the blood supply to the eyes.
Get your eyes checked annually.
An annual comprehensive eye exam is essential at every age. It will help keep your eyes healthy and detect any early changes or the onset of disease. Early detection remains the most important factor in preventing loss of sight.
Give your eyes a break.
The computer screens our eyes spend so much time trained on, can and will cause blurry vision, dry eyes, difficulty focusing and general strain to the eye, neck and back. Get into the habit of giving your eyes a rest every 20 minutes by looking away for at least 20 seconds and refocusing into the distance.
And, yes, now is the perfect time to take that break. Go ahead…look away.
Post first published Oct 07, 2018 and updated Mar 17, 2023.
The spectrum of vision runs on a scale from normal sight to low vision to blindness. According to the Cleveland Clinic, “Low vision is vision loss that can’t be corrected with glasses, contacts, or surgery. Low vision can include blind spots, poor night vision, and blurry sight. The most common causes are age-related macular degeneration, glaucoma, and diabetes.” They further estimated the prevalence of low vision at “one in six adults over age 45” and “one in four adults over age 75.” The term “low vision” is not well known by the general population and is mostly utilized in clinical settings.
The fact that vision loss is uncorrectable does not mean there is nothing we can do to mitigate the effects. To inspire that effort, and to recognize Low Vision Awareness Month, here is a collection of OE’s best content on the subject. It’s all about Making Adjustments.
Nate Berkus fixing up a blue pillow on a couch in a living room.
Nates Low Vision Makeover
Nate Berkus is looking at home design through the prism of low vision and we are delighted to receive his expert advice. He knows color contrast and he knows lighting. He knows how progressive vision loss can make it difficult to see the details in your own living space. He understands this because his grandmother had macular degeneration. Read Now
Savvy senior woman happily using a smartphone.
Your Smartphone is a Comprehensive Low Vision Device
Living with vision loss, like living in a pandemic, requires us to accept change and embrace technology. Digital access is no longer an option, it is a necessity. Every patient experiencing changes in vision should know there is a multitude of accessibility options, available in their smartphones (and tablets), designed to help compensate for low vision. Read Now
Man wearing Eyedaptic glasses playing scrabble with granddaughter.
What’s Up With Smart Glasses?
Smart glasses are evolving, but still not quite the ubiquitous, mainstream, vision-enhancing devices we were expecting. Low vision users should evaluate the options carefully, for specific tasks or purposes, and always try before you buy. Read Now
Hands reaching into well organized kitchen drawer.
10 Kitchen Tips For Low Vision Cooks
Whether you feel cooking is a joy or a means to a meal, low vision necessitates some adjusting in the kitchen. Here are some tips to consider as you keep yourself and your loved ones nourished. Read Now
OE Patients Podcast in white text with magenta and white OE Patients logo.
Episode 4: Must Know Info About Adjusting to Low Vision
Too many patients with low vision believe “nothing can be done” to improve their quality of life. In this episode, Dorrie Rush and Jaydan Mitchell are busting that myth with a review of just the basics everyone needs to know about living better with vision loss. Listen Now
Happy senior couple watching on a mobile smartphone and laughing together.
Living Better with Low Vision
A recent statement by the American Academy of Ophthalmology (AAO) was eye-opening, to say the least. They noted the number of older Americans with low vision will likely double in the coming years, and stated, “the tragedy isn’t that people have lost vision, it’s that most believe nothing can be done to improve their quality of life.” The ill-informed belief that “nothing can be done” is a false narrative that we are working to correct. Read Now.
Colorful clothing organized in a closet.
Low Vision Awareness: Time to Get Organized
Getting organized is key to living successfully with low vision. It may not be as easy to look for things as it once was. A neat and tidy environment will compensate in substantial ways. Think about how nice it is to open a drawer and find exactly what you’re looking for because it is right where you left it. With low vision often it is easier to put our hands on something before our eyes see that it’s there. Read Now
Collections of golden boxes on dark background.
The Hottest Low Vision Gifts
We’ve got the ultimate low vision gift guide. The curated selection you’ll be delighted to give or get, includes a wide range of price points. Some gifts don’t cost a thing, because the gift of empowerment is priceless! Read Now
This collection was previously published Feb 16, 2021 and updated Feb 14, 2023.
Vision loss is an intrusion that we all deal with in our own way. Our ability to thrive is contingent upon a willingness to make large and small adjustments to compensate for diminishing eyesight. Knowing all that did not prevent me from heavily avoiding the white cane. But once I finally ended the resistance, it did not take long to discover what I had been missing. It turns out, I am not at all special in this respect; making peace with this mobility device is often a complicated personal process.
What is it that holds us back? On Girl Gone Blind, Maria Johnson opens her post on the topic with this explanation, “If I use a cane… then the whole world will stare at me. I will look like a BLIND person! I’m only sorta kinda blind. I can see contrast and blurry objects, so I’ll be fine without it. I don’t want to hold a cane. It just stresses me out. White canes and ugly sunglasses are not for me. What if my friends see me with it? They will look and whisper… “OMG. Look at Maria! She must be really blind now… she needs to use one of those things, you know, a white cane!”
I, too, did not want the world to see me as a blind person, because I don’t see myself that way. Blindness is generally understood as total darkness, but that is not accurate for 85% of people who are legally blind, according to the American Foundation for the Blind. It’s a conundrum, of poor public awareness caused by inaccurate terminology, and a correction is long overdue. Vision loss is a spectrum, and that deserves a better understanding.
During the pandemic, my low vision got lower. The change was not subtle, more things disappeared in my broken visual field, objects appeared more pixelated, the haziness got denser. I hoped maybe the change was temporary, but I knew that was unlikely and unrealistic. Two retinal exams provided no explanation for the decrease in sight. I began adjusting, again, and took a few falls in the process. It was time for a cane.
A fair amount of procrastination preceded a call to purchase a cane from Ambutech. The sales representative, Laura, was thoughtful and thorough; there was much more to know about a mobility cane than I expected. She patiently explained the cane types, lengths, tips, and handles. Do I want aluminum, graphite or fiberglass? She informed me that all white canes are reserved for people who are totally blind, and canes with red at the bottom indicate the user has some sight. Who knew? I ordered a long white graphic cane with a marshmallow tip, red bottom with a black handle. And somehow I got it just right.
It was 10 days before the package arrived and another week before I opened the box. On that morning I took it for a walk on the Bronx River Bike Path, or I should say, it took me. For the first half mile, or so, I fought with the cane. Until my partner, Neil, took the cane out of my hand and showed me what I might do to get along better with it. His experience with the mobility cane was purely observational, but in that moment his guidance was immensely helpful. That was the turning point, it all began to click.
Dorrie on the Bronx River Path, walking with mobility cane, in the midst of fall foliage
I was amazed at how much better I felt walking along the path’s bumps and dips, just knowing what was ahead of me and underfoot. My acquired fear of tripping or falling largely abated as the sweeping arc of my cane proceeded. Bikes slowed down when they saw the cane, and everyone called out a greeting. The cane informed me when there was a curb, a curb cut, or a rocky stretch of pavement. On the way back through city streets, I discovered how it solved my problems walking up, and especially down, steps. It still feels gleeful to gracefully navigate a flight of stairs. I felt good again, walking everywhere with the cane; it gave me a renewed sense of security and restored my confidence.
From that day, to my great surprise, the cane sits at my front door and goes out whenever I do. Traveling in and out of New York City with the cane is comfortable again and also filled with surprises. Perhaps the most unexpected was how sweet I found the kindness of strangers. As I exited Grand Central Terminal and walked up Lexington Avenue, I discovered a lovely and quiet benevolence on the bustling streets, thanks to the white cane.
Dorrie Rush discusses The Not-So-Straight Line to the White Cane with Hadley Presents host Ricky Enger…Listen Here.
There are challenges involved in traveling through airports, always, for everyone. Add a visual impairment to the mix and you’ve got an excellent excuse to just stay at home. A travel companion could solve a lot of the problems, but there isn’t always one available. You can request assistance at the airport, but it may arrive holding a sign you cannot read and pushing a wheelchair you do not need.
For a while now we’ve been thinking the best solution to navigating the inside of an airport would come in the form of an interior mapping system and a really, really smart digital assistant. As much as we love the incredible strides technology is helping us take, navigation systems and digital assistants have not yet proven to be precise enough for this task. While we were waiting patiently for that, we started hearing about something called Aira (pronounced I-ra), a technology that depends on humans for accuracy.
Travelers in London Heathrow Airport.
How Aira Works
Turns out, that even in this intensely technological time, people still provide the most dependable source of assistance. Imagine that. Aira is a service that connects you with an agent via smartphone for live remote assistance, they call it “visual interpreting.” This independence-enhancing accessibility solution could possibly take the pain out of asking for help. You are not disturbing anyone; it is exactly what they are there to do.
The agents are trained to guide you. They can see a 120-degree view through the camera of your phone, much more than you’re seeing. Aira customers are called “Explorers,” and that makes it sound a little like we’re playing a game, but why not, perhaps it will make airport travel fun again.
How Much Aira Costs
Aira is a subscription service, now starting at $29 a month for 30 minutes with an agent, $99 for 120 minutes, and up from there. The service is accessed by a mobile app. Paying subscribers can call an agent for assistance navigating through any airport within the service area of North America, the United Kingdom, Australia, and New Zealand.
Where Aira is Free
There is also a network of airports that subscribe to Aira and provide free guest access to their customers. At last count, 50+ airports were actively participating in the Aira Network including JFK International, LaGuardia, Newark, Syracuse, Boston Logan, Charlotte Douglas, Dallas Love Field, and Toronto Pearson. A complete list of free airport locations seemed to be elusive. A representative from Aira suggested using the in-app search to find all locations on the network, but that did not render a list either. When in doubt, we suggest calling an agent on the app, or Aira customer service at one of the phone numbers listed below, to confirm if the airport you’re heading to provides the visual interpreting service for free.
We pay tribute to our longtime colleague and friend, Bernie Landou, who passed away at age 90. He was a veteran of the United States Military and served in the Korean War. He spent several decades working professionally in the business of public relations and enjoyed recounting his legendary assignments and encounters with celebrities. Upon retirement he indulged his love for fine cuisine by attending the French Culinary Institute in New York. He enjoyed sharing his skills to impress friends and family and went on to teach inmates at the Rikers Island Correctional Facility, to cook.
Bernie was affected by age-related macular degeneration and rose to the challenges of vision loss, with the support of his partner of 50 years, Dick Leonard. He became a volunteer with the Association for Macular Diseases at Manhattan Eye & Ear Hospital. He answered phone inquiries and requests for information and contributed to the quarterly Eyes Only Newsletter. He loved helping others with useful tips for daily living and low vision friendly recipes. His volunteer service, with the Association, led him to assume the role of Editor for the newsletter in 2007, then President of our Board of Directors in 2017.
Bernie Landou at 85 and as a young man in the US Military.
We applaud Bernie Landou for his years of enthusiastic service to people with macular diseases and low vision, as he found his own way with increasing vision loss. He possessed a sharp wit and a special gift for stating the obvious. He pointed out, as we were about to launch this website in partnership with Ophthalmic Edge, that “nobody knows how to spell Ophthalmic,” and he was right. We shortened our website name to “OE Patients” to resolve that conundrum. Thanks Bernie!
Here are 6 of Bernie’s articles, originally written for Eyes Only, now published on OE.
Choice Magazine Listening
Choice Magazine Listening
A precursor to audible magazines, established in 1962 for people with vision loss.
Having low vision will help you see things others will miss. Perhaps most noticeable is the lack of attention paid to the visual accessibility in ophthalmic offices, eye clinics and hospitals. There’s a lot of white on white, no texture or color. Elevators are dark and buttons are not tactile. Signage is illegible and ill placed. The first issue is often just locating the reception desk.
It does not have to be this way. The design process is mistakenly targeted to 20/40 vision, slightly below “normal.” However, that is not going to be helpful for patients, with uncorrectable vision loss, who are visiting eye clinics or specialist’s office. The fact is, creating spaces and products friendly to people with low vision, actually makes them better for everyone!
At Oregon Health & Science University (OHSU) in Portland, the Casey Eye Institute’s director, Dr. David Wilson, was determined to avoid visual stumbling blocks in the design of their new building for the Elks Children’s Eye Clinic, where patients of all ages are seen.
We would suggest following some of the sensible guidance from the OHSU design project. The designers developed filters to help them see the space through the eyes of patients with conditions that included cataracts, glaucoma, and macular degeneration. To learn how your space stacks up, why not invite a focus group of patients to stroll through the facility and call out the good, the bad and the ugly.
Waiting area at Elks Eye Clinic, Waiting area at Elks Eye Clinic (Image credit John Valls/OHSU)
Implement Elements of Universal Design
improve legibility and contrast of signage with clean, large sans serif font styles (never script or cursive)
place signs near to eye level
large reception desks, at the entrance, designed with highly contrasting colors to be most visible
furniture is placed strategically to eliminate obstacles causing slips or trips
handrails that lead to elevators for easier access to other floors
flooring is seamless and free of carpet to prevent the possibility of slipping or tripping
contrasting colors and textures on floors help to differentiate walkways and reception areas
glare from surfaces eliminated by using matte and textured finishes
hallway colors are contrasted with brightly painted doors to identify exam rooms
Perhaps that trend is about to change. The application of vision focused design principles make interiors friendlier for all.
Extreme weather, and war, have a special way of eroding our, already tenuous, sense of safety. At this point flash floods and wild fires affect more people than we would have ever imagined, yet many are still caught totally off guard. Don’t be surprised by the urgent need to evacuate. By now we know everyone should have a bag ready to go when you have to get out in a hurry.
Obviously, the need for preparedness is essential for people with vision loss, as it is much more difficult to gather things in a rush when you cannot identify them easily with your eyes. An organized bag, waiting to be scooped up at a moment’s notice, will give you some peace of mind and a better sense of security.
NASA image inside massive storm.
Heed the warnings. I was ill prepared for the damage done to my building, overlooking New York City’s East River on October 29, 2012. The evacuation order seemed extreme, so I ignored it and hunkered down at home. Power was lost hours before Hurricane Sandy wreaked her historic havoc on the island of Manhattan, breaching the rivers on both east and west sides. The super storm’s surge brought in nearly 2 feet of water, flooding the main lobby and destroying everything in it, including the majestic fig trees that stood in its beautiful atrium for 25 years. It left behind several inches of mud and decimated all the power, heat and air mechanisms contained on the lower level. It took more than a week to restore essential services to my home, while many New Yorkers were displaced for much longer periods. The day after, I packed the Go Bag, and walked it down 19 floors in a pitch black stairwell, never to challenge an evacuation order again.
Start putting together that Go Bag today and then review and update it periodically. Think of it as a bag that holds the things you need to get by, with some degree of comfort, if displaced from home for a week. Keep it in check, don’t create a kit for surviving the wilderness. Begin with a list of must-have items, along with important documents.
Image of Backpack ready to go.
Contents of the Go Bag
Waterproof Sealable Bags – Protect everything
Documents – Passport, emergency contacts, etc.
Backpack – Select for comfort and don’t overstuff it
Emergency Cash – Small bills are best
Mobile Phone Chargers – Wired and portable
Masks – Protection from virus, flu, smoke from fires
Disinfectant Wipes to clean everything
Flashlight with Batteries
Travel Kit Holding all Personal Hygiene Items
Eye Glasses, Contacts, Solution, Magnifiers
Sunglasses
Hearing Aids and Batteries
Medications – Prescription and OTC
Changes of Clothing
Food and Water – Bottled water, protein bars, nuts, dried fruit
Pet Food and Water
Grab and Go
Wallet with ID, Credit Cards
Mobile Phone
Laptop, Tablet, Earphones
Sunglasses
Glasses, Contacts
Magnifier
Keep your Go Bag in a designated place and let family members know where it can be found. Keep the things you use everyday, together and in a place where you can grab them, with your bag, and go.
The light was changing from amber to red when I turned left onto Main Street. My stepdaughter and I were on our way to a workout on a rainy Saturday morning. From the passenger seat of my trusty Subaru, she screamed — at what, I did not know.
Although we made it through the intersection without hitting an oncoming car that I did not see, our hearts were racing before we hit the gym. On the way home, I wondered about the car’s fitness, but the sudden mechanical failure turned out to be mine.
A few days later, my eye doctor stopped examining me, picked up his desk phone and speed-dialled the head of ophthalmology at the university. “There’s someone you must see right away,” he said.
On Dec. 1, 2011, I received a diagnosis of Stargardt disease, an inherited retinal disorder that affects central vision. Genetic testing showed that my mother carried the mutation, and my father contributed a common variant. One in 10,000 are afflicted with this rare condition, which often presents in childhood. I was lucky to have reached the age of 50 before I had to give up my keys. But I was in shock.
Since the first day behind the wheel of my father’s Ford truck when I was 14, I knew that driving would be my portal to other worlds. He wanted me to gain skills early and comprehensively. What better way than in the old ’48, with its manual transmission and well-worn body? With an enormous shift on the column and a clutch the size of a discus, it took all my strength to wrestle the gears, and of course my timing was poor.
I stalled often at first, while my father sighed and whistled “I Can’t Get Started.” On a dozen springtime Saturday mornings, I practised in the flat, empty pasture at my grandfather’s farm in rural Illinois. After finally finding the rhythm from first to second and then to third gear, it was time to advance to reverse. “If you need to back up, it’s hard to see where you’re going,” my father — who had been a soldier and a prisoner of war — said with unusual gravity. “You need to feel it.”
My father was resilient in this gear. This trait was my genetic inheritance from him, and a defining one, as I would come to appreciate after my diagnosis.
Once I mastered reverse in the hulking Ford, I drove my own car with confidence and what I might call desire. In the Midwest, roads are long and straight, with great distances between things. I wanted to feel the pedal under my foot, getting me to a new place under my own power.
That feeling persisted throughout my life. Working as a classical music agent, I once sped 200 km/hr in a Mercedes sedan through the night in the Swiss Alps to deliver a cargo of artists to a gig on time. The independence I felt whenever I turned on the ignition filled my whole body with energy and a taste of freedom.
“Seeing is believing,” the saying goes. What could “not seeing” mean for someone who loved driving as much as I did?
Blindness is a simple, unemotional word for most people — either a descriptor, as in “blind audition,” or, more often, a metaphor, as in “love is blind.” When sight loss actually happens to you, “blindness” becomes a full-body garment, custom made to conform with every contour of your inner and outer frame. It inflects you in a way that is incomprehensible to the sighted world as it influences your movements and interactions. How do you respond to your beloved if you cannot see his face? How do you, as an English major, cope with no longer being able to read? And how do you make sense of your changing self? No other sensory deprivation is so personal and laden with mystery. No one says “hearing is believing” or “smelling is believing.” No, only seeing is believing. Not seeing must be believing something else.
Getting to that something else now occupies the second half of my life in a way that, like the other car at the Main Street intersection, I couldn’t see coming. Like becoming aware of unconscious beliefs, it is a matter of bringing to light that which is not visible. This takes courage and imagination, but after the initial shock I have become aware of hidden resources to be tapped. Over time I have found that the sense of loss and vulnerability brought on by decreased independence can lead to a heightened appreciation for new ways of connecting to others and the world.
John M. Hull, a university professor of religious education who was blind, put it this way: “Should I begin to think of myself as a person disabled by a defect but empowered by a capacity?”
Hull spoke the question into a cassette tape recorder, his only means of writing in 1986. His book, On Sight and Insight, is a transformational account of vision loss. It helped me reframe the experience and develop creative and resourceful strategies to maintain relationships and work. The concept of a new-found capacity requires both inner and outer efforts. For me, this has involved everything from analyzing startling dream imagery, to memorizing regularly travelled routes and landmarks, to attuning my musical ear to pick up nuances in people’s voices and modulating my own in response.
Above all, acquiring skills in assistive technology has been like taking that pasture-driving course all over again. It is a matter of putting fear aside and practising a new transmission. Today there is a virtual showroom of “vehicles” used by people who are blind or partially sighted. Smartphone technology and screen readers now allow for a dazzling variety of applications, in which auditory information is activated by touch and thus provides access to written material at a terrific pace. I can shift through these gears at speed, and if I wander into a blind alley, there are keystrokes for reverse. Reading is well within reach.
Everything speaks now — Alexa, ovens, doorbells. It is no longer stigmatizing to walk around talking to yourself on the street or having your phone talk to you. This is now normal. The game-changing remedy for being blind or partially sighted — “accessibility” — is an accepted gear for the general population. This being the case, never again shall the words “nothing can be done” be used by any eye-care professional when surgical procedures or drug therapies may not be available. Much can be done, and the delivery system — already preloaded in “Settings”— is likely right there in the pockets of both the patient and the practitioner. It takes only a willingness and curiosity on the side of both parties to engage in this exploration of vision rehabilitation. This is the best time in human history to lose sight because patients now have another way to be independent.
I feel fortunate to have received guidance at a vision rehabilitation clinic, as well as services from the CNIB Foundation and a support group established by the Foundation Fighting Blindness. Every patient should be so lucky, but many suffer silently when this life-changing transition is not fully appreciated or addressed by physicians. Early guidance and referrals can create a road map to vision loss that is not a dead end but instead offers promising pathways.
Professor Hull coined a phrase that speaks to me and may resonate with other patients who experience sight loss: “whole-body seer.” As reliance on other senses increases, awareness of the whole body is enhanced. Hull writes, “A whole-body seer is someone in whom the specialist function of sight is now delivered upon the whole body and no longer specialized in a particular organ.”
Such a concentrated state of being may offer as heightened a sensation as driving. Indeed, I have noticed increased awareness and pleasure in all kinds of weather, and a deep desire for nature. With support, I have been able to accept and explore the complexities and the progression of my low-vision condition. I have not been tempted to get behind the wheel again. The day I unwittingly risked my stepdaughter’s life — and my own — shut that door for good. But I’m no longer experiencing the situation as demanding a shift into reverse. I’ve picked up a new set of keys to unlock this new life of mine and am finding my way to somewhere else.
Footnotes
This article has been peer reviewed.
This is a true story.
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Reference
1 ↵Hull JM. On sight and insight: A journey into the world of blindness. London: Oneworld Publications; 1997.Google Scholar
