Blind in the City: Some Straight Talk About Eye Pressing

When I went to the Louisiana Center for the Blind, there were two other young adult students who had the same eye condition as me: Leber’s Congenital Amaurosis or LCA. The three of us became friends, and would joke about being part of an exclusive “club.”

During one of our class discussions, one of the guys with LCA mentioned that he used to press on his eyes when he was a baby. This caught my attention. Eye pressing (also known as eye poking or, in clinical terms, the oculo-digital reflex) involves pressing one’s fingers, knuckles or fist against one’s eye. It’s a common topic of discussion among parents of blind babies and children, particularly those with LCA and related retinal conditions. Appearing early in infancy, eye pressing may be one of the first hints that a baby is blind, as it was in my own case.

After my friend mentioned eye pressing, another student mumbled something like “Hey, I bet he still presses on his eyes.” My friend got quiet, and the subject was quickly changed.

Later I told my friend that I admired his courage for mentioning eye pressing in the class. All too often, blind children grow up internalizing shame about their eye pressing. The behavior alarms and vexes sighted parents, who don’t understand it, and they worry that their children’s eyes will be irreparably damaged, or that the pressing will make their child look more “blind.” Sometimes even the most well-meaning, gentle attempts to break us of the habit can teach us that there is something wrong with us. And, at least, many of us wouldn’t publicly admit to doing it.

My friend’s response was to say, “You know, sometimes when I get really tired, I still do it.” I admitted I hadn’t completely broken the habit either. Then he chuckled and added, “And I’ll bet you anything that [third friend] does it too. But he would never ever admit it.”

For many (though not all) people with certain retinal conditions, eye pressing is a lifelong habit, though we can learn to control it over time. I am told I started pressing before I was 6 months old. As an adult I can control it fairly well in public or when my hands are occupied. I still catch myself and move my hand away from my eye about a dozen times a day on a typical day.

I get so many questions from parents about eye pressing that I want to share some information here about what it is, why we do it, what the consequences are (and aren’t), and how parents and their children can address it in a balanced way. My primary goal here is to take the stigma out of eye pressing, and to offer some insider information based on my own experience and that of others shared with me over the years.

Q: Why do people press on their eyes? It looks painful!
A: Some people think that we press on our eyes to stimulate vision. While that may work for sighted people with intact retinas, I have yet to hear from any blind person who reports seeing lights, colors or other desired visual effects from eye pressing. The most common explanation I hear (which matches my own experience) is that pressure on the eyes simply feels good. Some people have learned to get the same sensation of eye pressing from pressing on their eyebrows, the bridge of their nose, or squinting their eyes tightly shut. Many of us who eye-press also have involuntary eye movements (nystagmus) as part of our eye condition, so I have wondered if eye pressing may simply be a way of settling our eyes down.

Eye pressing is often lumped in with other self-stimulatory behaviors or “stims” like rocking or hand flapping. However, unlike these other stims, eye pressing tends to be a “low-arousal” activity. Nap time or car seat time are prime pressing times for many babies and toddlers. I sometimes press in my sleep, and often when I am awake but tired, or lost in thought. Although anxiety can also be a trigger, this may simply be a sign of lapsing self-control under stress.

Q: Will my child develop permanent damage from eye pressing?
A: This question is hard to answer definitively, because people who eye-press also have lifelong eye diseases. So, when a person develops changes to their eye shape or complications like glaucoma, it is impossible to tell if the problem is caused by the underlying eye disease, eye pressing, or both. It is difficult to find comparison groups of people with the exact same eye physiology who do vs. don’t have a history of eye pressing.

Certainly, some children who eye-press develop sunken eyes, keratoconus (a change in corneal shape over time), or eye infections. Others have none of these issues. It is not clear how much of this is caused by eye pressing itself, but reducing the frequency of eye pressing will reduce the odds of causing lasting eye changes. Any effects are cumulative, so occasional pressing is safer than constantly doing it.

I developed keratoconus as a teen and now am prone to dry eyes. When I have been pressing for a long time, my eye becomes a little sore and irritated. This is my main incentive to curtail the habit in my adult life.

Q: How do I get my child to stop eye-pressing?
A: To unpack this question, let’s consider the nature of the eye-pressing habit, the reasons why controlling it may be desirable, and some ways to balance a desire for control with the need to respect the person’s neurology.

Eye-pressing has been described as a reflex. It appears very early in life, and as such, is an innate habit. That said, it is controllable. Many people report that once they become aware of the habit, they are able to control it to varying extents. However, for most of us, it takes some effort to control, hence why we may press more when we are tired, ill or stressed. Some people can extinguish it completely, usually by working hard and often getting intensive support at first from another person to make them aware of the habit.

Controlling the frequency of eye-pressing may help promote eye health. There is also the social aspect, that sighted people don’t press on their eyes, and so the behavior can create a negative social impression on others.

I do think it is a good idea to make children aware of the negative aspects of eye pressing, in age-appropriate ways. This awareness will help equip them to develop self-control as they get older. For very young children, keeping their hands engaged or using glasses as a barrier can reduce the frequency, but probably won’t extinguish it completely. (Remember naptime). For older children, It is possible to explain in a matter-of-fact, nonshaming way that eye-pressing looks off-putting to sighted people and could change the shape of their eyes over time.

Some parents and educators swear by behavior modification strategies to stop kids from eye-pressing. Common strategies include using code words to alert a child that they are pressing, or developing rewards for periods of control. Such strategies do work, but only up to a point, because they rely on adult intervention. When an adult isn’t monitoring their behavior, a child can simply go back to eye-pressing. To have meaningful control, the person needs to self-monitor in the absence of external cues. Usually, this happens when someone decides they want to reduce or stop their eye-pressing because they want to, not because an authority figure is “making” them stop.

Generally, I advise parents to try reminders or rewards as a way of promoting self-awareness, in a way that fits their family style and their child’s personality. But, parents must also understand that the underlying urge to eye-press doesn’t go away, and that realistically, their child may continue to eye-press at least occasionally. It is important not to restrain, punish, or shame a child for eye-pressing. Unfortunately, I have heard of children having their hands restrained, or being made to write essays on eye-pressing as a means of punishment. Such strategies are not only harmful, but they fail to address the reflexive nature of the behavior. Rather, children can accept that eye-pressing is part of their neurology, and still learn to control it when doing so is advantageous for them.

Blind in the City: The Elusive “Over There” and Other Ambiguous Communications

“Can you move down a little bit?”
“Scoot up please?”
“It’s over there.”
“That way…”
“Excuse me …. Excuse me ….!”

These and similar phrases are uttered on a regular basis in our culture. And for most people, they seem to pose few communication problems. But for me, all of the above phrases, without context clues, can leave me baffled.

When someone asks me to “move down” or “scoot up” I know they are not literally asking me to move toward the ground or toward the sky, respectively. But the terms “up” and “down” can be used to signify forward, backward, right or left. I’m assuming that sighted people gain clarity from some kind of visual cue; I can’t be sure about that, but somehow the ambiguity is resolved for them.

Similarly, many a blind person has bemoaned the frustration of being told that something is “over there.” For fun, I looked up the phrase “over there” in the dictionary, and found that it is defined as “a short distance away” with no clues about directionality. Is it a short distance to my left? Right? Front? Back? Diagonal? Again, I am told, this ambiguity is resolved for sighted people through gestures or pointing.

Finally, the phrase “excuse me” has a multitude of meanings. It can mean, “I want to get your attention,” “I want to pass you” (without a hint as to which direction I’m passing in) or “”Excuse me, I just passed gas in your presence.” How do we know what you mean?

While nonvisual communication can be challenging for folks who are used to punctuating their words with visual cues, it need not create an impasse between blind and sighted communication partners. Here are a few hints for communicating more clearly with a blind person:

  1. Use the terms right and left, but only if you are able.

  2. “Right” and “left” are unambiguous spatial terms. A person’s right side will always be on their right. Directions involving right and left thus don’t rely on any visual reference point. Consider giving information such as:
    “It’s the last door on your right.”
    “Could you scoot to your left, please?”
    “Excuse me, may I pass on your right?”

    There is an important caveat, however. In my life I’ve learned that it is fairly common for individuals to confuse left from right. This seems common enough to be its own form of neurodiversity. Thus, I sometimes get directions that are physically impossible for me to follow, like being told to turn left when there is a wall on my left. I’ve also had the confusion of someone telling me to turn left while cuing me to the right in other ways (like pointing their voice to my right or trying to physically point me to my right). This seriously scrambles my brain! In these instances, it is better not to get any directions at all than to get directions that are flipped. Furthermore, since some segment of the population has left-right confusion, it is likely that some blind individuals also experience left-right confusion and have trouble receiving information in this way.

    So, if you have a firm grasp of left from right, feel free to communicate directions in this manner. If left-right confuses you or your communication partner, consider the next suggestion:

  3. Use auditory, tactile or physical reference points.

  4. Sighted people communicate using visual reference points, like pointing to an object. When communicating with a blind person, you can use reference points accessible to our other senses. If the blind person is hearing, you can use your voice as a reference point to signal directionality. For example:
    “Could you move toward my voice?”
    “This way…” (turn and walk in the desired direction).
    You can also generate a sound cue by gently tapping on an object (if it’s appropriate for the setting). If cuing someone with your voice, let the person follow behind you, instead of trying to guide them from behind.

    Another good reference point is to communicate using landmarks on the person’s body, especially when describing physical moves (to teach dance or yoga, for instance):
    “move toward your feet.”
    “Put your left hand on your right thigh.”
    “Move to the front of your mat and face away from me.”

  5. Use touch, but only with permission.

  6. Sometimes touch is really the most effective way to convey complex spatial information, especially in cases where hearing is less effective (a deaf-blind person, a loud setting, or a very quiet one, etc.) If the relationship is not a familiar one, always ask permission before maneuvering a person’s hands to convey information. Keep in mind that we use our hands and our canes to get essential safety information as we move through space. While touch can be helpful, if it is not timed right, it can also interfere with our orientation process. For example, I use my hands to locate the back and seat of a chair before sitting down. Sometimes someone will, with all good intentions, hold one or both of my hands while I am trying to sit down in a chair, which feels very unsafe. A better strategy is to either verbally cue where the chair is, let me locate the chair myself using my cane, or simply place my hand on the back of the chair and then leave me to sit down. Never use a blind person’s cane as a pointer because we need our canes to be on the ground picking up essential information about what is on the ground. Instead, and only with permission, you can point the person’s other hand in the desired direction. Another touch-based strategy is “hand under hand” in which you simply model an action while the blind person places their hands on top of yours to learn what you are doing.

Related Reading:
“Over There”

Blind in the City (and Disabled in the Skies): Exploring Air Travel and Disability

As I mentioned in last week’s post, I’m a semi-frequent flyer, and have been since my college days. Strangers I meet in airports often seem shocked to see me navigating the airport independently with my white cane. In this post, I want to try to take some of the mystery out of that process. At the same time, though, air travel isn’t always smooth sailing for disabled people. In the United States, the Air Carrier Access Act protects our right to fly independently, and to receive needed accommodations during the trip. Still, though, misunderstandings and failures of implementation result in civil rights violations, equipment damages, and other problems for disabled air passengers. I will outline some of these ongoing problems and needed solutions at the end of this post.

Q: How do you navigate the airport without a travel companion?
A: Like any other travel task, air travel is more manageable when broken down into its component steps. For me, a typical flight experience involves checking in, locating and going through a security screening, locating my departure gate, boarding and deboarding the plane, (occasionally) collecting baggage, and finding ground transportation. For each of these steps, I utilize a variety of nonvisual landmarks. For example, security checkpoints make distinctive sounds; gates are usually numbered in consecutive order; and when boarding the plane, I can simply follow the person ahead of me in line. For other things, such as locating a specific baggage carousel or exit door, I ask passers-by to describe visual information such as that printed on signs. By asking for help only with one part of the process at a time, I can greatly reduce my dependence on others.

As I will explain later in this post, I prefer to keep a low profile in the airport so as to avoid being patronized or drawing unwanted attention to my disability. So, I typically check in for my flights using the airline websites and navigate directly to the security checkpoint. I rarely check bags, but when I do, I can recognize my suitcase by touch on the conveyor belt

Q: What kinds of accommodations do airlines provide?
A: Airline and airport employees offer a variety of accommodations to passengers with disabilities. When navigating the airport, passengers can request a walking escort to provide directional guidance or assist with luggage. Passengers needing mobility assistance may use a borrowed manual wheelchair with an employee serving as a pusher. Wheelchair users must typically check their chairs as luggage and use a borrowed aisle wheelchair to board and deboard the plane. Some passengers, such as those with intellectual or developmental disabilities, may request to have a family member or friend who is not flying with them accompany them through security to their gate.

Passengers with service dogs are permitted to bring their dogs with them on flights without having formal proof that the dog is a service animal, as long as they can explain what task the service animal performs. In addition, passengers with emotional support animals (to assist with mental health disabilities) can bring their emotional support animals if they are properly documented. Passengers using service animals, and other passengers with particular accommodation needs, may request to “preboard” the plane before the rest of the passengers board. This may be necessary to allow enough time to settle a service animal, secure equipment, avoid standing in a long line, or gain a preferred seat (such as a seat near the front for someone with a mobility disability).

Q: Why don’t you just use the employee escorts at the airport? Wouldn’t that be so much easier?
A: I have no philosophical objection to using accommodations that might help me have a better travel experience. There are occasional times when I do use airport escorts. However, I have learned that much of the time, the quality of service is lacking. For example, if employees are spread thin, I may end up waiting up to 30 minutes for an escort. In those cases, it is simply faster for me to navigate the airport on my own. I have also had escorts who guided me to the wrong place.

Another common problem is the lack of control we often have over what specific accommodations we get. Many of us who are blind, but who don’t have mobility disabilities, have found ourselves in situations where we requested a walking escort and instead were pressured to travel in a manual wheelchair with a pusher. In these cases, we are often expected to choose between an inappropriate accommodation (a wheelchair) or none at all. To complicate matters, wheelchairs are in limited supply. While we are being pressured to accept wheelchairs we do not need, other passengers with mobility disabilities may be waiting far too long for a wheelchair they do need.

I must emphasize that truly effective accommodation is different for each individual, and sometimes a person’s accommodation preferences differ from day to day. It is important for airlines to offer accommodations so that passengers with disabilities can fly. But, equally important is a system that allows disabled passengers to choose the accommodations that work for them. Unfortunately, in practice, airline and airport staff often act on assumptions about accommodation needs, instead of actively listening to their customers. For example, passengers with visible disabilities, like me, often find ourselves fighting off accommodations we don’t need. In contrast, passengers with invisible disabilities may find themselves fighting for the most basic accommodations.

I keep a low profile when I fly because I want to be in charge of my travel process and choose the assistance that works for me without having unnecessary or patronizing assistance foisted upon me. I recognize that this is a privilege I have. Many other passengers rely on some form of accommodation in order to fly. They, too, must have the freedom to choose the most effective accommodations.

Q: What other issues affect disabled air passengers today?
A: In some countries, passengers with disabilities aren’t allowed to fly without a nondisabled companion. In the United States, disabled people are permitted to fly independently, except in some rare circumstances involving multiple disabilities that prevent a person from assisting in their own emergency evacuation. Despite legislative progress in the United States, however, misunderstandings and failures of implementation can lead to serious problems. Here are a few recent examples:

  • D’arcee Neal, a disabled activist with cerebral palsy, needed an aisle wheelchair to exit a United Airlines flight. He waited for more than 30 minutes without receiving a wheelchair. In desperate need of the restroom (the airplane lavatory is not wheelchair-accessible), Mr. Neal crawled off the plane.
  • Recently, several wheelchair users have had their chairs accidentally broken by baggage handlers unfamiliar with the equipment.
  • Guide dog users, and other service animal users, have found themselves re-seated or even denied boarding based on a claim that there wasn’t appropriate space for their dogs.
  • Blind people who use white canes have had canes separated from them and stowed in a closet or placed in the overhead bin against their preferences. In fact, the law provides for a blind person to stow their cane on the ground between the window seat and window, where it is safely out of the way.
  • Clifton Miller, a blind grandfather, was denied boarding on a Frontier Airlines flight last year. The gate agent questioned whether Mr. Miller could properly care for his 18-month-old granddaughter on the flight. In fact, Mr. Miller had been a single father and had just spent several days alone with his young granddaughter.
  • On my 30th birthday, my husband and I boarded an American Airlines flight on our way to visit my family and friends for the weekend. Due to my blindness, I was ordered to sit in the window seat because, I was told, if I took an aisle or middle seat, I would be blocking the exit of other passengers in an emergency. (Ironically, due to my blindness, the window seat offers more value to my husband than it does to me). Eventually, the flight attendant apologized and admitted that he had confused an “exit seat” (non-window seat) with an “exit row seat” from which disabled passengers are categorically banned. (This ban is, itself, highly controversial in some disability circles). Unfortunately this apology only came after my (nondisabled) husband followed up, mainly because I was too shocked and shaken to do so at the time.
  • More generally, disabled passengers are often told that, in the event of an emergency, we should wait to be assisted by a flight crew member. The assumption that we will always need to wait for rescue is often the driving force behind instances of discrimination. It seems not to occur to all airline staff that in an emergency, disabled people will be using whatever resources are at our disposal to get ourselves to safety as quickly as possible.

In sum, air travel has become much more accessible in recent decades, at least in the United States. But we still have far to go. Much of the progress we need will depend on initiatives to educate airport and airline staff about the varied experience of disability and the most appropriate allocation of resources. By learning how we live our daily lives on the ground, perhaps air travel staff will be better prepared to provide us with an accessible, respectful travel experience.

Blind in the City: Why We Don’t Touch Faces, and What We Do Instead

In the 1985 movie Mask, Diana, a blind teenage girl, falls in love with Rocky, a boy who has a craniofacial condition. At one point, Diana asks Rocky what he looks like. He jokes that he looks like the Greek god Adonis, then says, “I don’t really look like Adonis; I’ve got this real strange disease, and it makes my face look real unreal.” Diana proceeds to touch his face, and eventually says, “You look pretty good to me.”
check out this clip

Images of blind film characters touching faces to learn about a person’s appearance have become so common that some people believe blind people do this in real life, too. Others may wonder how blind people engage in social activities that, for sighted people, rely on seeing faces: identifying people, evaluating their appearance, or connecting emotionally in relationships. The truth is that I have yet to meet a blind person who habitually touches faces; this act is not only socially sanctioned, but it usually provides little useful information. Instead we use other methods to identify people, evaluate their appearance, and connect emotionally with them.

Q: Can you recognize who I am by touching my face?
A: Probably not. Human brains are wired to process faces visually. Sighted humans tend to process and remember each unique face as a whole entity, rather than as a collection of features. It is difficult to get that holistic sense of a face through touch, nor is it possible to pick up on many of the subtle details that distinguish one person’s face from another’s. Furthermore, if this is not already obvious, touching a face is a much more intimate act than just looking at one, and strikes me as a little unhygienic.

Q: So then, how do you know who’s speaking to you?
A: No, I can’t recognize you across the room by the perfume you’re wearing. But, blind people can recognize people’s voices with reasonable accuracy. Actually, sighted people can do this too, but unless they’re talking on the phone, they don’t usually have a reason to hone the skill. That said, I might not recognize your voice after one interaction; it may take a few conversations before I’ll know your voice well enough to pull it out of a crowd, and if I’m not expecting to run in to you, I may not recognize you immediately.

Q: How do you picture people in your mind? How do you know what your family and friends look like?
A: People who have once had sight can often “picture” people visually in their minds. I have never had sight, so I have no way of creating visual images. However, I do have sensory memories I associate with people. With my spouse and other close family and friends, I can “picture” them by imagining hugging them, and remembering their overall body shape. For others with whom I don’t have regular hands-on contact, I can “picture” them by hearing their voice or recalling a recent conversation. Although I, like most humans, feel a connection with loved ones through physical contact, I don’t feel deprived by not knowing all the details of their visual appearance.

Q: How do you know if someone is attractive?
A: Much of physical attractiveness is subjective, and blind people, like sighted people, will vary in their preferences. There are also some standards for physical beauty that are generally agreed-upon in a particular culture. Blind people listen to discussions of beauty, and we can be influenced, for better and for worse, by the opinions of our friends and loved ones. We may find some individuals more attractive than others based on nonvisual aspects like their voices, scents, or the feel of a hug or a handshake. Check out this video to learn more about how a few blind individuals describe attraction.

Although we certainly can be interested in another person’s physical appearance, we might not learn these details about another person until emotional or intellectual chemistry have already developed in a relationship. When I was single, I would often go on one or more dates with a man before knowing much about how he looked. I generally discovered that if I found the man to be physically attractive later, it could increase the chemistry, but like Diana, I wouldn’t necessarily be put off if he wasn’t particularly attractive, if we already had a rapport. With professional colleagues or more casual friends, I might never find out much about their appearance. So although physicality does matter to blind people, it may not have the same primacy as it does for many sighted people.

Q: Without seeing facial expressions, how do you know how another person is feeling?
A: I’ve heard that up to half of in-person communication is visual. There is also this notion that blind children have to be systematically taught the most basic aspects of social interaction because they miss so much visual information. While I don’t doubt that facial expressions and other visuals play an important role for sighted people, I don’t feel limited in my communication abilities. When I was a child, it was sometimes assumed that if I was rude to another person, it was because I couldn’t read their emotions on their face. Yet from a very early age I was attuned to vocal cues. Some of my earliest memories involve my parents’ tones of approval or disapproval, and both parents could say my name in a tone that made me freeze (and probably still could). Like most children, there were times when I chose to ignore another person’s annoyed or upset tone, because I was wrapped up in my own feelings, not because I was unaware of theirs. I can generally pick up on most emotions of others by listening to them. In fact, vocal expressions may be harder to fake than facial ones
Of course, it works better when I know the person well, and if the person chooses to be quiet (like if they are pouting), I might not get the hint as quickly as a sighted person. I also find it challenging to read the collective reactions of a quiet audience, such as while I am giving a presentation. Generally, though, I have found that blindness has little impact on the communications that matter most, such as in my marriage and my relationships with friends and family.

Q: How can I communicate well with a blind person?
A: If you don’t know the blind person well, go ahead and identify yourself by name. Also, if you are interacting in a professional capacity (such as working at a store with a blind customer) and you are wearing a professional uniform or name badge, be sure to offer that information. For example, “My name’s Jill and I’m a WalMart employee.” Don’t expect the blind person to automatically remember who you are, even if you remember them (if they’re a repeat customer, for example).

Other than that, interact with us just as you would with anyone else. Oh, and please don’t ask me to feel your face, even if you buy me a drink first.

Blind in the City: Exploring Shades of Blindness, Part 2

Last week, I wrote about my perception of colors.
this week, I want to share some comments from others who are blind or have low vision. As you will notice, color, like other aspects of the visual, can be very subjective, and much of what we perceive visually is a matter of how our brains interpret the input.
Note: All comments are anonymous, and are printed exactly as written.

  • I have a love-louve-hate-love¬ relationship with color. When I was small, I could see color, and I remember being regularly immobilized with fascination and wonder. I had no detail vision, but I could see expanses of pure color, and I would stare mesmerized at the blue sky or a field of snow or up into moonlight or even into blackness. I lost all light perception in middle school without mentioning it: everybody already assumed I was blind, I think and nobody much wanted to talk about it. I thought not mentioning this was one of the “rules. interestingly, infuriatingly, perhaps due to retina damage, what I visually perceive now is unpatterned color which I can control to some small extent if I concentrate on it. I imagine that if I focused on this, I could conceivably control it more thoroughly perhaps, and invent appropriate colors: for the things I imagine around me, rather than blobs of orange and green, could I turn my face skyward and experience the blue I remember? I don’t know, and I haven’t taken what I imagine would be the considerable amount of energy necessary to implement this: if it would even work. It feels like a weak, sad substitute for the “real thing”, and I rarely mention it because people react weirdly. It also, perhaps even more strangely from the sighted person’s perspective, becomes too bright when I have a headache and is profoundly distracting!
  • For what it’s worth, I’ll offer my take on this. Colors aren’t real properties of external reality, they are only phenomenal properties of perceptions. A red object isn’t made of red atoms or red molecules, for instance; what sighted people refer to as red is the effect of the texture of the object, which is responsible for certain frequencies of waves to be refracted from its surface. Photons in these frequencies strike the retina, where they initiate an electro-chemical reaction, which, when transmitted through the optic nerve, is associated with a perception sighted people refer to as red. Neither redness, nor any other color, is “out there.”
  • I’m totally congenitally blind with some light perception. Color was nothing more than an abstract concept for me, until one night eight years ago. I was smoking marijuana at a family friend’s lake, and he happened to check the time on his IPhone. I had a startle response to the light, which is unusual for me. My family friend, who is a psychologist, hypothesized that the marijuana was having an effect on my vision, so he used the strobe light app on his IPhone to experiment. I was not only able to sense the light, but I could tell when it was changing. “Bigger!” I said. “Smaller! Sharper! Smoother!”” My friend explained that the changes I was detecting were actually the strobe light changing color. I was perceiving color as texture. Black was a “big” color; white was the smoothest color.
    I later learned that this phenomenon is called synesthesia. .
    As a poet with an intense interest in the visual, I was delighted with my newfound knowledge, however fleeting it was. And, as a researcher, this discovery marked the beginning of my journey to understand how marijuana impacts vision.
  • I, like you, have light perception and occasional light projection too. By the way, I loved your explanation of these, as I never knew you could have varying degrees of light projection and now I know why I test as having light perception only at the eye doctor’s but can detect lights, windows, etc. I however had some more vision, including color perception, as a child, which diminished slowly. At five, for example, I was naming lots of shades of colors. At eight, I started confusing green and blue, and by twelve, I had lost most color perception – interestingly red being the exception. I by this time perceived darker colors as black, in fact. As a person who had color perception until age twelve, and who is clueless about music, I never associated colors with sounds, feelings, etc. I did and still do, however, have the reverse experience, sort of: I have projected grapheme-color synesthesia. This means that, when I feel a letter or number on my Braille display (or imagine it), I see a corresponding color in my mind’s eye. I have a feeling that my synesthetic colors have become a little less bright over the years, since by now it’s been 20 years since I last saw color properly. As for your reference to the wavelengths of colors, I could never remember those and they just felt like physics jargon to me.
  • I had partial sight in one eye until age 11, sight enough to read large print and ride bikes. After retinal surgery, my parents would hold up plastic children’s building blocks and ask me what color they were. I remember clearly seeing red, but squinting at the light-colored ones, trying to decide if they were white or yellow. My vision deteriorated quickly after surgery until only sunlight perception remained. Despite having color memory, colors are very simplified for me now. I couldn’t describe what cyan is if my life depended on it. I never had that color pointed out to me as a child. Kelly green? Even teal is a very faint memory, and I’m not sure I’m remembering it right. But yellow-green? That’s the color of my birthstone rings I had growing up. That was that snot-colored crayon I didn’t like. I remember cornflower blue, it was that really pretty light blue one. Violet? That was the crayon I hated because I thought it was going to be red, but it colored this ugly purple shade. I have synesthesia with music and voices meaning that sound has color attached. This trips me up on occasion, because the key of D-major is a bright purple, whereas G-major is a darker, richer purple. When I hear these two keys, I have trouble differentiating them. The same is true of A and B-major. Their colors are too similar, and I get confused about which key I’m hearing. I don’t have any issue picking out pink C-major from bright light green F-major. My synesthesia blurs the line of gender-conforming colors. I work with a man who has a pink-toned voice. One of my female friends has a nice light blue shade. I even know one person whose name appears white to me when I hear it, but the voice is tan. For me, colors are an uncertain, fading memory. My wrap skirt is magenta. Am I remembering the character Magenta from Blue’s Clues correctly after all these years, or is it violet I’m picturing?
  • I had partial vision growing up and always drew and colored. The Crayola 64 pack was my color palate and I still know those crayons by their 1970’s names. Forest green versus Pine Green, Pea Green versus Yellow Green. Burnt Umber, Raw sienna, etc. I organized my crayon box in color families. My vision was fairly 2-dimentional with very little depth perception but color was definitely there and still is. When I lost most of the color vision to advancing glaucoma, my world was a mess for a while as one medication literally took my color vision over night. Things were extremely grayed out then went completely monotone. Then my brain just took over and began assigning colors to things and places. I also have synesthesia and every sound, letter, number, phoneme, morpheme, has a color.
  • Since I used to be sighted, I totally understand color. It’s frustrating when shopping for clothes or home decor, and I know exactly what color and shade I want, but I ultimately have to trust someone they understand my vision. And when shopping with someone who doesn’t know how to describe color is very frustrating. I had a friend tell me a pair of shoes was Target red, so a true, scarlett red, but turns out, they are a dark coral, so between a deep orange and pink. I don’t shop with her anymore, ha. People always want to know what I “see.” I do have light perception and can see shadowy blobs. But I describe what I “see” as TV fuzz. I have white, blue, yellow and red pops of color, with frequent flashes of white light and swirling rainbows. I’m pretty much on an acid trip all the time LOL!