Things I have learned after a lifetime of low vision…
I have had low vision my entire life. It has gradually gotten worse, and at times, I have had no vision at all. I have been thinking of some things I wish someone would have told me when I was much younger that might have helped living with low vision be easier for me. All people are different, so all of my advice might not work for you or you might have things to add in the comments. But here are a few things that I have learned that have helped me.
Vision is dynamic.
Because ophthalmologist tend to use one or two quick and dirty assessments to measure vision function, people tend to have a really confused idea of what it means to have low vision or blindness. Eye doctors use the Snellen chart (the letters on the wall) and the 20/20 scale to measure acuity. This is the one that says that you are legally blind if you have vision of 20/200 or greater in the better eye with best correction. Ultimately, this is some legal line that someone once drew in the measurable sand. It does not tell much about how people see. People with low vision can have problems with acuity, peripheral vision, vision in changing light, binocular vision/depth perception, color, floaters and flashes, or even how the brain perceives and processes what the eye is seeing. In addition, environmental factors can greatly affect how you use your vision. Weather, lighting, the complexity of whatever it is that you are looking at, your health and your mood are just some of the things that might affect how you see. Vision loss is not linear, and most people don’t understand and can never understand how much you can see. You might not even understand how much they can see.
You don’t have to answer the question, “How much can you see?” if you don’t want to.
You might not be able to anyway, and likely the person who is asking won’t really understand your answer. Usually, the person asking has good intentions, and what they are really asking is, “How can I be of help?” This is the question I answer. It can be done politely, even “I’ll let you know if I would like you to describe something to me/help me, thanks.” The problem with “How much can you see?” is that it usually doesn’t really tell the person anything that useful or translate into the support you need. Sometimes it can even open the floodgates for judgement and misunderstanding. People still end up guessing what they feel you may need help with or worse, what they think you should be able to do for yourself. Besides, it is your private health information. You have control over whether and what you want to share with people.
Along with this, you also don’t have to play the “Can you see that?” game if you don’t want to. For example, once I was in a meeting and I asked for the white board and overhead material to be made available to me in another format (just electronic documents in this case.) But the person running the meeting proceeded to try to adjust the overheads to make them bigger, constantly going “Can you see them now? How about if you sit over here? How about now?” I know what will work best for me, no one else does. If it was a matter of switching seats or asking for the overheads to be enlarged on the whiteboards, I would have asked for that. I am not getting my vision examined by anyone besides my eye doctor. Again, people probably mean well and are trying to help, but I just say, “Thank you for your suggestions, but I know what really works best for me and it is to have the overheads available on my computer.” If you don’t know what would work best for you and you want to experiment a bit with different set ups, by all means, do. But this is your decision and no one else’s.
Don’t regularly strain to see something. Don’t kill yourself to see.
When adapting to vision loss, there are different modes you can try. The options include using your vision with enhancements such as glasses and magnifiers, using your hearing, or using your sense of touch and sometimes complimenting with other senses as well. For those who have some usable vision, there is a strong bias in the medical and educational fields towards the enhanced vision methods. There is a bias that any vision, no matter how poor, is better than doing things the “blind way.” This happens because professionals try to “normalize” the disability by trying to have a person use methods that are as close to “normal” as possible. Also, enhanced vision gadgets and methods are what sighted professionals are most comfortable with because they are easy to learn and are usually pretty self explanatory. I have seen people with low vision use magnification devices to read a one foot-tall letter at a time. They can only see one or two letters on the screen and by the time they get to the end of the sentence, they have forgotten the beginning. It is a slow and tedious process that is not very efficient. Although CCTVs, screen and other magnification are easy to learn and can be helpful for some things, don’t use them if they hurt or are uncomfortable. If they cause eye strain, headaches, back and neck aches or are generally inefficient and frustrating to use, it is probably not the right method for you, or at least not the main method. Maybe your daughter sends you a brand new picture of your grandchild and you really want to see it, but it will take some strain to see it. If it is something quick for a minute or two, that’s fine. But if your daughter sends you a novel she really wants you to read and it will cause you hours of strain, there are better methods out there.
If you are employed and in a competitive environment, this might even be more important. You will do a better job and be much more efficient if you find other ways to do your work rather than straining your vision. If you are reading your computer screen at 10X magnification regularly (not just to look at an occasional picture or graph) it might be really hard for you to keep up with the demands of your job and it might cause you a lot of pain and frustration as well. The auditory and tactile methods, such as voiceover and braille, often do take longer to learn, but they can make your life much easier and more comfortable in the long run.
When I was a teenager, I was set up with a really unworkable situation by my ophthalmologist. I wore contact lenses and then alternated between two different sets of eye glasses on top of the contact lenses. One for reading and one for distance. I had significant trouble with contact lenses, as they causes a lot of irritation and constant pain. Then, I was expected to switch between the two pairs of glasses continually to look at the chalk board and then down at my paper on my desk. It was a mess and never really worked, but because this was the solution my ophthalmologist came up with, I was expected to use these things. I felt like there was no other way. There is such a thing as trying too hard! In college, I abandoned the contacts and the glasses altogether, became a lot more comfortable and functioned a lot better without worrying about corrective lenses. If glasses fit comfortably and help a lot, great! If they don’t, or don’t really work in practical life, it is not wrong to revise how you use them or abandon them altogether.
I took a class in college called augmentative communication, which worked with finding ways for people with speech and communication disabilities to communicate as much as they could. One thing that I learned there and I have carried with me in many other aspects of life, including low vision, was to be multimodal; or have several ways to do things. With people who had communication disabilities, often the best way for them to communicate was with technology. They used computers and voice synthesizers not unlike physicist Stephen Hawking. These methods gave them the most dynamic communication available. However, they also needed ways to communicate while taking a bath or going swimming, or if the electricity died and it was dark, or if their battery power went off, or if someone could not understand their computer. We wanted people to have a whole bag of tricks to use in any situation.
Some people have this idea that if you have low vision, you have to pick one type of accommodation or the other. You have to exclusively use vision enhancement tools or exclusively do things the blind way. In fact, in the past, vision professionals operated on a notion of “maximizing” vision. They felt that it was best for people with low vision to use all the vision they had to its maximum extent possible, because using vision was categorically better than being blind. Some even thought that it would be harmful for those with low vision to use the “blind ways” because they might not utilize the vision they have. Thankfully, most vision professionals are not so sold on “maximizing vision” and are much more flexible now. You do not have to pick one or the other method, you can use everything that helps, even if you have redundant systems. Using Braille, a white cane, or other blindness techniques does not mean you can’t use the vision you have or also sometimes use magnification. It is about having the widest range of choices that work in the widest range of situations. Hey, when I drop something small on the floor, like an earring, I use all my blindness methods. I listen to tell if I can hear where it fell. I sweep my hand in a systematic way from left to right and top to bottom to find it. And I also look for it with my eyes. All at the same time. Sometimes my hands find it first, sometimes my eyes do. (Usually my hearing fails me, but I’m hearing impaired so its not surprising.)
If you find that using Braille (where you can lay back in your bed and get comfortable) to read a book is great, or using voiceover to read an ebook works for you, except sometimes there are pictures in the book that you want to see so you use magnification, you are multimodal. Use it all! If you find that you are avoiding night time and traveling into dark restaurants because it is hard to see, learn to use a long white cane and get out there! Your vision will still help you out when it can.
Another added benefit of learning multiple techniques to deal with your low vision is that most of us have unstable vision. My vision has progressively gotten worse over time, and at times has gotten dramatically worse in an instant. Even if your vision is relatively stable, we all will have to deal with age-related vision loss, which often affects people with low vision more severely than those with normal vision. When you know that you could do things without any vision at all, it creates a peace of mind that is of great relief to many people. Also, if you lose more vision rather suddenly, your transition will be easier. You shouldn’t have to stop your life every few years to figure out how to adjust to your worsening vision. I had a retinal detachment during my first pregnancy just a few days before my kids were born. Because I knew the skills of blindness, I was able to adjust quickly to my sudden lack of vision and concentrate on being a mother. For me, it has always been easiest to learn these skills and build this confidence by using blindfolds during the learning process. It really cemented the skills into my brain and gave me the confidence to know that I really know those blindness skills, I did not “cheat” and use vision to learn them.
Having a toolkit of multiple ways of doing things using vision, hearing, touch and other senses is probably the one most important tip that has helped me adjust to low vision.
You likely already know (or will learn quickly) how to best use your vision.
I guess I cannot speak for all people on this point, but speaking for myself and also what I have heard from others, people with low vision do not experience difficulty understanding what their vision is telling them. This may seem like an odd point, but it seems like there is a notion among professionals that people with low vision need to be taught how to utilize their vision effectively and understand what they are seeing. I suppose if someone has a traumatic brain injury or a brain related vision disorder, maybe this is true. But I find it odd that people would not think we can interpret what we see to the best of our ability. People with 20/20 vision do not have perfect vision. They have the typical best vision for humans. Despite what they sometimes say, they cannot see “everything.” If they could, we would not need telescopes, microscopes and X-ray machines. When they look out to the horizon,, they have a limit to what they can see, but no one suggest that they need help interpreting what they see. This can become an issue when sometimes people tend to take anything you say you saw as unreliable or think they have to teach you what you already know, making you question whether you know it. Sometimes this has a (likely unintentional) sort of “gaslighting” effect, where you might feel like what you observe is unreliable. I have had eye surgeries and had a sudden change in vision and then sometimes seen a giant apple coming down the street when it is really a red semi. But my brain is smart enough to override that thought and use my other senses and context cues to understand that no, there is not a giant apple coming down the street. Usually, after a sudden change in vision, these episodes will go away by themselves in a few days. There is no need to have several sessions of therapy. I also have never found it too hard to choose between which method (visual, auditory, etc.) was best to use in any given situation. Here is also where I think the blindfold training helps. If you have good blindness skills, you know you can always default to those if vision isn’t working or doesn’t feel comfortable. When vision is easier, its easier. When its not, or its not getting the job done, you know it. Most people seem to be able to switch back and forth with relative ease, or use different methods simultaneaously.
Some people with low vision may benefit from vision therapy, non-surgical eye exercises that are designed to improve vision. I am by no means an expert on all the benefits of vision therapy, but I had a miserable time of it as a kid when I had to patch alternate eyes to combat monocular vision (lazy eye) and follow mazes and things to supposedly help this or that eye function. I never achieved binocular vision and my vision never improved due to eye exercises. I found the whole process a bit odd and unhelpful. However, if vision therapy helps you or you want to try it and see if there is anything that is of benefit, then do it. But don’t feel like you must. This tip boils down to “trust yourself” and don’t feel pushed to have to try all things to improve your vision or that you need special handling to understand what your eyes tell you. And don’t feel bad if you ask sighted people for additional information. Our brains have an amazing ability to fill in the gaps, and I have a strong hunch that people with low vision (and low hearing) and blind and deaf people have an above average ability to synthesize the information they pick up from their senses. Not in the sense that we have superpowers, but in the sense that we’ve trained our brains to take bits of information and put them together into a meaningful whole. Everyone does this, but people with sensory disabilities do this considerably more than those without sensory disabilities. See what you see, interpret it as you see fit, ask for more information if needed and if you are occasionally wrong, so are sighted people so who cares?
Be proud of who you are.
This is good advice for everyone, but especially people with low vision. People with low vision constantly get bombarded with messages about how they are lucky to have the vision they do and that they have it easier than those with total vision loss. Sure, in some ways they do. Vision is handy and convenient and can make many things easier. But people with low vision often have to deal with misunderstandings about their disability and what can be expected from them. Many times, we might hear some version of the “faker” label. If you use a cane or a guide dog, and then you use your vision to read a sign, sometimes that is very misunderstood by the public. It can be hard to be in this position. Nik, who is totally blind, always marvels at the different ways he and I are treated sometimes based on people’s perceptions of our disabilities. But your safety and your ability to function and get things done is more important than worrying about what other people think. Give yourself permission to do what works for you no matter what it looks like to others, and set your own standards for what you can do. No matter how much vision you have, you are a respectable person and you have the right to use whatever accommodation you are using if you have decided it is what works best for you. Don’t let others tell you what they think you should use.
It can be hard to use that long white cane. There is a stigma that comes with it, for sure. But it is also hard to stumble around uncertainly, or avoid going out and getting things done when you can’t see well. Even if you have some vision, if the cane increases your safety and makes you feel more comfortable in your travels then it is right for you. It is ok for the cane to hit things and touch things and make some noise. It is ok for you to take a few extra seconds to investigate a set of stairs or unfamiliar terrain. It is even ok if you are using it so that people will know why you need to have the bus driver tell you the bus number or the barista read you the coffee menu. It is a symbol of your independence and that you are taking control of your life.
These are just a few things I have learned over the years as a person with low vision. Some of these suggestions may be of use to you if you have low vision, but in the end, they are suggestions I’m passing on because they have helped me. If something else works for you or you have different ideas about what I have posted here, please feel free to put them in the comments. I am also always open to questions.