(Featuring “Sarah’s Day”)
by
Dan Roberts
As an unabashed gadget geek, I have followed the development of low vision technology since my diagnosis in 1994. The first fifteen of those years offered a number of optical and non-optical devices to help our low vision community get by, and we have hungrily consumed each and every one. During the most recent years, however, we have witnessed an amazingly speedy evolution.
Like a tsunami, low vision technology is suddenly flooding the marketplace with assistive devices straight out of science fiction. As a result, those of us who have been riding the wave are watching our sense of sight evolve into more of a convenience than a necessity. Eyes are great to have, but notwithstanding their I-Max quality entertainment value, we are discovering that they aren’t the only show in town.
The English Longitudinal Study of Ageing found that people with poor eyesight are three to five times more likely than those with good eyesight to suffer from low quality of life, poor psychological health, and depression. When those inequalities are accounted for, however, the impact of poor eyesight itself makes almost no difference. Low vision rehabilitation combined with access to low vision devices can help balance many inequalities by strengthening and supporting other senses that have lain dormant in deference to sight. By strengthening those senses, most independent activities of daily living can be continued, and quality of life can be maintained.
Chronic adult onset retinal diseases present a unique challenge, in that the course of such diseases is usually slow and progressive. A newly-diagnosed person is commonly not yet motivated to seek or commit to low vision rehabilitation, and the time for rehabilitation differs with everyone, depending upon their levels of visual function. When loss of function, therefore, eventually does generate a need for intervention, the person may be at a loss as to how to proceed. This can cause confusion, depression, and noncompliance with doctors’ recommendations, lessening the chances for a satisfactory quality of life.
In 2011, I conducted research that revealed that a motivated patient can conceivably preserve or restore 99% of all independent activities of daily living lost to poor vision. Sight, therefore, could be considered as nonessential. Like the sense of taste, it’s wonderful to have, but we can actually learn to do without it as long as our senses of hearing, touch, and smell are in good working order. If vision loss occurs, however, and alternative skills and assistive devices are not introduced to compensate for it, a person’s quality of life will suffer greatly.
(Source: www.mdsupport.org/sensory.pdf)
“A Self-Help Guide to Nonvisual Skills” is freely available online and in large print from lowvision.preventblindness.org/publications.
Most of the skills outlined in the Guide are simple behavioral or environmental changes, like applying makeup with a finger instead of a brush, or painting door frames in contrasting colors to the walls. Many of the skills, however, also involve learning how to use optical and non-optical devices and the many types of electronic and computer products now available. This means becoming acquainted with:
Optical and Non-Optical Devices
• Braille Products
• Daily Living Aids (Magnifiers, calculators, phone pens, i.d. mates, portable print magnifiers, keyboard vision aids, cell phone vision aids, playing cards, sleep switches for cassette players, sunglasses, magnification mirrors, highlighted and raised line paper, binoculars, telescopes, etc.)
• Enhanced task lighting
• Prescription glasses
• Magnifiers
• Talking appliances, clocks, watches, thermostats, etc.
Technology Products
• Audio Book Players
• Electronic Magnifiers
• Portable Electronic Magnifiers
• Global Positioning Systems
• Personal Digital Assistants
• Optical Character Recognition Software
• Screen Magnification Software
• Screen and Text-to-Speech Readers
• Speech Recognition Software
• Cell Phones and Mobile Accessibility Devices
Experienced blind people know how well they can do without eyesight when proper training and resources are available. But, since the technology evolution is making it simpler for the rest of us to see without sight, we’re beginning to realize how easily vision can be replaced. Naturally, we want to maximize any existing vision as much as possible, because functional eyesight makes life considerably easier in this man-made visual world of staircases and posts in the middle of nowhere. We are finding, though, that evolving technology is swiftly closing the gap between visuality and blindness, and that the two can even exist symbiotically. We can use ophthalmic vision to get to the pantry, for example, but then we can switch over to tactile vision when it comes to identifying which can of vegetables we want. We can use ophthalmic vision to locate the magazine we would like to read, but then, with a press of a button, we can close our eyes and let our ears do the reading.
Only a few years ago, we were learning how to identify a dollar bill by the way we folded it. Now we point a gadget at it, and it tells us what it is. We once depended upon strangers to tell us what street corner we were on. Now Siri tells us after she gets our coordinates from a satellite. Those of us with some functional vision used to purchase magnifiers for every occasion, bold-tipped pens, and writing templates so we could communicate using our eyes. Now we have several hundred electronic miracles that help us to also see with our ears. And for the profoundly blind, digital text can now be read in Braille on a tactile computer screen.
Formerly expensive specialized devices are now inexpensive mainstream devices. As recently as three years ago we were buying text-to-speech software, optical identifiers, and GPS navigation devices. Now, all of that technology and more is contained in a single iPad, smart phone, or personal digital assistant. And those individual formats are much less expensive than the total cost of such devices.
Allow me to introduce Sarah. She is a fictitious character affected by end-stage macular degeneration. She retains her peripheral vision, but total central vision loss has made it impossible for her to see details with her eyes. She is an 80-year-old widow who lives alone in a retirement apartment community, and she has every intention of maintaining her independence as long as she is physically and mentally able. She lives mainly on Social Security and savings. We’re going to follow Sarah through a typical day and observe how she applies a multi-sensory cocktail of skills to manage her life. Some of these skills developed naturally as her eyesight declined. Others she learned from professional rehabilitation training, and others she learned either from reading, from speaking with others, or simply by figuring things out on her own through trial-and-error and stubborn persistence.
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Sarah’s Day
“I usually awaken at around 7 AM. Then it takes me about an hour to have a shower and apply a little makeup if I plan to go out in public. Today, I’ve been invited to a luncheon with three friends I met thru my low vision charity work. So I want to look extra nice.
“Since my vision loss is mostly in the middle of my sight, I don’t have any trouble walking around, as long as everything stays in place and I remember where I put things. It’s the details I have trouble seeing, so that’s when I have to either get creative or reach into my imaginary bag of tricks. That’s a pretty big bag of stuff I’ve learned or devised on my own, and if I don’t have the gadget or the means, I either have to invent something or ask for help. I don’t mind asking for help, but sometimes there’s nobody around, so I like to figure things out for myself if I can. And if I can’t, and there’s no help, well…I just don’t do it. But with all of the gadgets they’re coming up with nowadays, there isn’t much I can’t do.
“Like getting ready in the morning. I’ve learned to put my shampoo, rinse, and liquid body soap in different pump containers so I can tell them apart. I’ve learned to put the toothpaste on my finger and then on the brush or directly on my teeth. And my support group had an entire session once on all kinds of tricks for applying makeup and styling my hair.
“But the big challenge comes in dressing properly. There again, I’ve learned how to hang my clothes for identification and matching. But my son bought me a portable color identifier, and that really makes it easier. Now I hear about a camera that attaches to your glasses, and it can talk to you through your earpiece and tell you what color you’re pointing at. Can you believe that?
“So anyway, my watch tells me it’s 8:30 already, so I finish dressing and go to the kitchen for a little breakfast. All I want is some coffee and an English muffin with jam, which used to be quite a chore. But again, I now know to keep everything where it belongs, and I don’t have any trouble finding the fixings. Sometimes, though, I want a different flavor of jam, and that’s when I used to identify the jars with stick-on dots or rubber bands. But then I’d forget my code and end up having to open them anyway for a smell or taste. Now I have an electronic reader sitting on the counter. I leave it on all the time, so all I have to do when I’m preparing food is set the container or cookbook underneath it, and it reads the label to me. I’m still paying for it, but it’s been worth every cent. And it’s also portable, so I can take it to the store with me.
“I pour myself a cup of coffee, using my liquid level identifier–another gift from my generous son– and I eat my muffin. I also remember to take my medications and vitamins. I remember, because my smart phone alarm goes off right on time. Again, I use my reader to read the labels so I’m sure to take the right dosages. But guess what. I hear that my pharmacy now offers to attach free talking devices to medicine bottles. All I have to do is request them, and my medicines will start telling me all about themselves. I just hope the pills don’t start carrying on conversations with one another. That would be a distraction, wouldn’t it?
“Well, now it’s 9:30, and I have time to check my email messages and pay some bills before I go to the luncheon. My laptop computer is all I need to do those things. It reads my mail to me, and I can either reply by speaking into it or typing, whichever I choose. I have arranged to have all my bills paid directly from my bank account, so those I haven’t set up to do automatically, I also handle by email. I can also use that old thing called a telephone if I want to know my bank balance at any time, so I don’t need to bother with balancing my checkbook anymore.
“To read what little postal mail I receive, I use my new electronic reader now. Before I got that, I could still do a pretty good job of reading mail with my old electronic desktop magnifier, or as a last resort, my lighted hand-held magnifier. There’s always a way, and I’m happy to say that the ways are getting easier every day. Some ways are more expensive than others, but the prices are going down with every new gadget that comes out.
“So now it’s 11:00 and time to go. I quit driving awhile back, at the same time I moved into the retirement community. They have a van that can take me to places like the grocery store or the clinic. And if I want to go somewhere else, or if I didn’t live where I do, our city provides a paratransit service that will take me door to door. I just have to plan ahead in enough to time to make reservations. Today I’m using the city paratransit, and I have allowed enough time for inevitable delays. While I’m waiting, I check my purse for the correct fare. I have folded my bills in such a way as to identify their denominations–a trick my low vision specialist taught me. I could buy an electronic money identifier, but I can’t afford everything, so I’m willing to hang on to the old-fashioned way this time.
“The luncheon is delightful. This restaurant actually has audio menus, which is why we patronize it. My rehabilitation training pays off well, as I find everything on my plate and don’t spill a thing. After catching up on the latest gossip, our conversation comes around to low vision tricks and toys. I’m the only one of the group who is visually impaired, so they are always interested in hearing my reviews. I tell them it is difficult to keep up with everything coming to the market, and that it seems I just save up to buy one product when an even better one comes along.
“Well, by 2:00, I’m home again. I got off the bus at the grocery store, picked up a few things, and then called the community van for a ride home. On the way back to my apartment, the driver told me he might be out of a job someday when those driverless cars come out. I assured him that he would still have a job as far as I was concerned, because you won’t catch me in one of those things. The only thing scarier than a car with no driver would be a car with me driving.
“After I put my groceries away (everything alphabetical, milk on the left, orange juice on the right), I laid on the couch to rest, and told my smartphone to wake me up at four. Not only did it wake me up on time, but it reminded me to water my pot grown tomatoes. It’s like having a mother again, except it didn’t fix my supper.
“So after watering the plant and dusting the apartment for good measure, I eat a nice tossed salad and then sit down to listen to the news and watch my favorite game show on the television. It’s a fairly large screen, but I put on my binocular glasses so I can see the letters Vanna is turning over.
“After the show, I use my laptop to call my grand daughter, Lori. Her children show me pictures they drew, and they giggle when I have to get close to the screen to see them better. Their laughter doesn’t bother me. I just feel so fortunate to have lived long enough to see this miracle of talking face-to-face with my beautiful great grandchildren more than a hundred miles away.
“After too short a time, we say our “I love you’s” and hang up…or sign off…or whatever you call it. I check my screen calendar for reasons to get up in the morning this coming week, and I find plenty. A doctor’s appointment tomorrow, a support group meeting on Wednesday, a choir concert on Thursday at the church, and the cleaning service on Friday. After transferring reminders to my smartphone, I settle down in bed for an hour of reading. I like to listen to audio books from the library. They’re free, I don’t have to turn pages, and they don’t mind if I drift off in the middle of a chapter.
“It’s been a good day. Good because, even though I can’t see very well with my eyes, I can see with my ears, my hands, my nose, and my tongue. And, as I fall asleep, I thank God that there are so many ways to do that.”
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Obviously, seeing with diminished eyesight is challenging. But if we close our eyes and look around in the different ways now available, we will surely find those challenges less daunting and the future more promising.