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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.

From the Disability Wisdom Community: Interactions that Make Us Go Hmmm

At the end of my sophomore year of college, I was sitting outside studying for my last final exam before summer break. I remember it was the final for evolutionary biology, my least-favorite class that semester, and I was really hoping for a good grade on the exam. I was absorbed in reviewing my notes on my braille notetaker, my cane stowed behind my feet on the ground, when an unfamiliar man approached me and asked for directions to the Administration building. Since I happened to know where it was, I obliged. But midway through my pointing him in the right direction, his entire demeanor changed. He must have seen my braille display on my lap.
“Whoa, you’re blind!”
“Yes, I am” I said, going back to my notes.

Instead of heading off to find the Administration building and letting me study in peace, the man then announced that “I’m your angel today.” He mumbled something nonsensical about God and then tried to give me a $20 bill, which he said I could use to buy food. I politely declined a few times before he mumbled something else about praying for me and walked away. While I don’t remember all the details, I do remember wishing I had asked him, in all seriousness, to pray for me to get an A on my final.

I’m pretty sure that most, if not all, disabled people have had at least one puzzling interaction with a stranger. As the stories below illustrate, sometimes strangers say things that are insensitive and hurtful. Other times, we are told or asked things that aren’t necessarily harmful, but are just so puzzling and weird that we’re at a loss as to how to respond. Here are some examples. [Pro tip: If you don’t want to unintentionally create an awkward situation with a disabled person, before saying something, ask yourself if your comment or question would be cool to say to a nondisabled person? If not, then try saying something else instead. “Hello, my name is…” is a good start.]

  • “I would kill myself if I had that” referring to my condition.

  • All I can say is Mardi Gras is a very… Very… Interesting time of year.

  • Recently, a guy walked beside me for over five minutes telling me how sad my life must be because I was blind. But that he said he understood what I was going through because he was losing his hearing but he had a good sense of smell so that made up for it, but my life must be so bad and sad because I don’t have that extra sense.

  • I had one lady at an airport tell me that if I put my fingers together, I’d be healed.

  • Oh and always there’s stuff like “have you tried this nonsense/snake oil/my cousin sells…”

  • I have a intersectionality story. Years ago, when I was dating my first girlfriend, This couple came up to us and started telling us the good news. My girlfriend and I were both wearing rainbow shirts and holding hands, so we looked at each other like, “oh crap, here comes some attempt to save us from damnation or something for being gay.” We spent the next hour or so hearing about if I let them pray hard enough for me, God would give me my sight back. Years later, I wish I had reminded them that, according to my beliefs, they were insulting God, because He made me this way and he doesn’t make mistakes.

  • And of course, there are those people who think that my kids are always helping me, acting as cited guides. Once, when my son was just two years old, I was holding his hand as we approached an escalator, obviously intending to help him, but, a lady came up from behind us and said, “oh, that’s so nice you have a child who can help you do things like escalators. “ she didn’t get a very friendly look from me, but, I left it alone and just continued on our way, deciding to pick him up and carry him down the escalator instead. I think it’s startled her that I did that LOL.

  • So many stories, where to even begin… I had one stranger come up to me and ask “What did your parents do to piss God off for you to be born blind? It must have been something really bad.” I also had a server once try to help me by grabbing my hand and slamming it ontop of a pizza. This was right after she told me not to touch it because it was hot. Hot indeed it was. Nothing says finger food like having your palm covered in tomato sauce and melted cheese.

  • A friend of mine was once asked if he read books with his mind.

  • Stranger at SubWay restaurant: are you blind? (From across the store)
    Me: yes????
    Stranger: have you ever considered killing yourself?
    Me: (long pause) no
    Stranger: you should.

  • I have cerebral palsy and I had this said to me. “Oh my sister had that for a few months when we were growing up. My parents just gave her lots of fish oil.”

  • When I was 12 and traveling downtown on an orientation and mobility lesson, a woman approached and said, “honey, I just wanted you to know even though you can’t see, God at least blessed you with being pretty, so you will always have someone to take care of you. Make sure you say a little prayer and thank him for that now.”

  • When I was in the fourth grade we once had a substitute teacher.
    I had never met him before this day.
    I entered the classroom and had hardly got myself situated at my desk, and he grabbed my hand without saying a word and forced me to touch his beard.
    To say I was creeped out would not do this justice.

  • My mom is in a nursing home, and I visit every day. About every other time, regardless of how professionally I dress, or how confidentl I walk in, some staff member asks me sweetly: “Are you a new resident?”

  • Last Saturday, I was doing homework, (as you do), and I had the house to myself. During one of my breaks, I was listening to music and dancing and decided to have some gumbo. I ordered from Postmates, all was good. An hour later, the lady pulls up, and I wave at her from the porch. As she gets closer, she’s all friendly and stuff. When she went to hand me the bag, it occurred to her that I couldn’t see, and she went, “Oh… oh my God. Baby…” she then trailed off, then ENTERED MY YARD to give me a FULL BODY CONTACT HUG. She apologized for her to guffaw in assuming I was normal, (sarcasm). She gave me my food, said God bless you, and left. The gumbo was good.

  • So I’m going to skip past all the regular interactions of prayer and healing, saying that they would kill themselves if they were me, etc. and jump to like you said, some of my wildest ones. One of them was an evangelical who actually grabbed me during a college tour to pull me aside because he was there with his daughter and wanted to pray for my site. I can laugh about it now but I actually almost broke out into tears then because it was my very first college tour and it was absolutely humiliating and he actually put his hands on my face until I pushed him away. The second one was another evangelical group that came up to my husband and I at Union Square, Park in NYC.was the most bizarre story, but they came up to us and they were telling us how they can sense others auras or something to that extent and they could tell us words that had meaning to us. and of course to me the first word they said was dog, as if a dog and a blind person are these two crazy things to put together, and I told them that no, the word dog has no significance to me because I actually really hate dogs. They then in puzzlement were like oh, we thought for sure that word would be special for you and I was just like nope. Then of course they got to their point which was that they noticed I am blind and if they could pray for me. I told them that that’s not necessary and I actually wasn’t really welcoming prayer at that moment and I was just trying to eat lunch with my husband on a beautiful day. Then I told them that my husband and I had been talking about the Middle East and the Syrian war as it was during the peak of the Civil War, and I told them that I’ve been watching these awful videos of children being bombed, and parents screaming over the corpses of their kids bodies, and I would actually really love if they could pray for Syria and pray for the US to stop bombing it and for the Civil War to end. they actually stopped, and said no. They literally said they would not pray for it. And that’s when I told them it was time for them to leave our table.

  • I’m not disabled but my daughter is blind. I was recently telling a student about this and how it’s interesting that the visual cortex can be re-purposed for other things like tactile and auditory processing in blind folks…it was not an emotional conversation, just a chat about science and I happened to mention my daughter because I’m a mom and moms insert their kids into conversation whenever they can. Suddenly, another student I had never met before came exploding into my office (I guess she was eavesdropping from the hall??) and said, “my heart is breaking for you that you and your daughter have to suffer with her disease!” I was totally shocked but calmly said, “no need for that, neither of our hearts are breaking but are you here for office hours?”

  • I was in a Lift to the doctor’s office last Friday. My driver asked if I was religious, so I shared that I grew up as a non-practicing Baptist and attended a Lutheran denomination house church recently, but that I wasn’t really religious. He asked if anyone had ever prayed for me before, and I explained that it made me uncomfortable to have people praying for me in public back in the south, because it draws so much attention and people stare. I suggested that if he wanted to pray for me on his own time, that would be fine. He was extremely polite about it, but he asked if we could pull over in the doctor’s parking lot and if he could pray. I wanted to say no, but I also didn’t want to make the interaction awkward. What would it hurt to let him pray, even if I didn’t like it? He was being so nice, after all. So, he pulls over, and he takes my hand over the back of the seats. He starts praying, really feeling the Jesus as he’s snapping along and feeling it. He asks me to repeat, “Father, I accept healing into my eyes.” I do it, a little reluctantly. He laughs and says, “Naw, you gotta say it like you mean it.” So, I laughed it off and tried again. Finally, we were done, and I reminded him to pull up to the doors for me. I got out and went on my way. He was extremely nice and polite about the whole interaction, but I was still very uncomfortable. I felt like I wasn’t in a position to tell him no. I couldn’t exactly bail out of the car on the side of a busy street or in a big parking lot. Even if I did, he would have jumped out after me to help. Blind people don’t get left alone. I don’t really believe in prayer as a medical miracle, and engaging in prayer is a very personal experience I’m not comfortable sharing with a stranger. Religion was never a part of my life, so it feels a little alien. As a woman in a car with a male stranger, as a blind person in an unfamiliar area, as a blind woman who is expected to be nice to people and accept their help, as a relative of sincere Christians, I felt like I had to let him pray. I felt like even a polite refusal would have made me the bad person in this situation. I think that’s why I’m so uncomfortable with people praying for me in person. I don’t feel like I have the choice to tell them no.

DAMn. #MeToo [Repost]

“While I think we spent a lot of time thinking about how we educate people outside the little person community to treat us with a modicum of respect, I also think we need to have a real critical conversation about and within our community as it relates to our own #MeToo moments.”

Recent events in U.S. politics have forced us to reflect on the painful realities of sexual assault. Disabled people face a heightened risk of all kinds of abuse-physical, sexual, emotional and financial. Much of that abuse comes at the hands of nondisabled people, including family members and caregivers. But we must also work within our own disability communities to create a culture of respect and safety for all. Organizations like Little People of America (LPA) can offer valuable safe havens from the ableism that we encounter in the wider world. But the frustration that people may carry into these communities, if we aren’t careful, can lead to abuse. In this article, Rebecca Cokley reflects on her own experiences in LPA, and what she is teaching her children about respect and consent. Rebecca Cokley is the director of the Disability Justice Initiative at the Center for American Progress.

DAMn. #MeToo

Busting Myths About Cochlear Implants

“CIs shouldn’t be compared to cures for diseases. A better comparison would be to a prosthetic leg. Prosthetic legs enable people without legs to walk, but they don’t have the same functional ability as real legs. Prosthetics are tools, not cures.”

Cochlear implants (Cis) can give some auditory perception to deaf people. But they can be misunderstood by members of the hearing and Deaf communities alike. In this Facebook post (reprinted below), Sarah Sparks reflects on her experience of living with a CI for the past year. She breaks down several common myths about Cis and provides some balanced perspective on the benefits and limitations of having a CI.
Check out her post on Facebook here.

One year ago today, my cochlear implant was activated. The past year has been a mixed bag of experiences. I’ve learned through these experiences that as much as the world needs education about Deaf culture and sign language, it also needs education about CIs. So, on the first birthday of my fake hearing, these are some things I wish other people knew about CIs and CI users. Some of these are directed at hearing people and others are intended for Deaf people who don’t use CIs:
– Not every activation is like what you see in the viral videos on social media. My activation day was painful and a traumatic experience. I had an air pocket between my skin and the internal device that was causing problems, and I had to be reactivated a few days later.
– Further on that topic, not every activation video you see is a CI. There are different kinds of implantable devices, and some are not for deaf people. There are cochlear implants, middle ear implants, bone conduction implants, and auditory brainstem implants. The best known viral activation video (the one with the woman who has black hair and tattoos and starts crying with joy immediately) is, in fact, a middle ear implant activation. Middle ear implants are not for deaf people.
– My experience of hearing with a CI has not been the same as what I remember from years ago when I had typical hearing. It sounds artificial. A year later, it still sounds artificial. Humans sound human, but not like they did years ago.
– CIs shouldn’t be compared to cures for diseases. A better comparison would be to a prosthetic leg. Prosthetic legs enable people without legs to walk, but they don’t have the same functional ability as real legs. Prosthetics are tools, not cures. Also, most insurances classify CIs as prosthetics. A CI is an auditory prosthetic.
– Many people with CIs do not hear as well as you think we do. My aided thresholds on my best day are between 30 and 45 dB HL. Even with my processor on, I do not have the audibility that a person with typical hearing does. And audibility isn’t the same as clarity; I don’t hear as clearly with my CI as a person with a mild to moderate hearing loss who uses hearing aids would.
– Although there are CI users who hear well enough with their devices not to need additional support, that’s not true for all. Many CI users need to read your lips to understand your speech. In noisy or echoey environments, I might as well not have my processor on because I can’t hear in those spaces.
– Although having a CI and benefiting from it is a kind of privilege, CI users aren’t as privileged as you might believe. Some of us struggle to get the accommodations we need because of other people’s assumptions about how well we hear. A good metaphor for this is the lower middle class high school student whose parents don’t have enough money to pay for college, but they make too much money for the student to qualify for federal grants. My experience as a CI user has been in a similar middle space: I hear enough that lots of people tell me I’m a hearing person, but I don’t hear enough to function exactly like a hearing person in the hearing world. I still need accommodations for access.
– Having a CI doesn’t make a person “not deaf”. CI users don’t hear anything through the device when our external processors are turned off. We don’t sleep with them. We don’t shower or swim with them (with the exception of some who use the water wear for these situations). Many of us need to take short breaks from them in situations with overwhelming noise. The internal implant does nothing without the external processor.
– “Having a CI means not needing sign language” is a myth. CI users communicate in a variety of ways. There are many CI users who sign, work with interpreters, and need sign language access for classes, work, and events. CIs give a person auditory access, which is not the same as language access or language development.
– “Having a CI means you want to be part of the hearing world instead of the Deaf world” is a myth. We can be part of both worlds. Many CI users want to be part of both worlds. We are discriminated against in both worlds, though. I hope that will change in time as more people learn about the benefits and limitations of CIs. It’s possible to love your CI and love sign language too.
– Deaf and hard of hearing people who were once hearing and now have CIs are in a uniquely challenging situation. Sign languages are not our native languages, so learning and communicating in a sign language requires a huge amount of commitment. Spoken languages are our native languages, but they’re no longer fully accessible. For a person in my situation, the only form of fully accessible language is written. CI users like me try our best to make do with what we can get from two languages without full access to either.
– The risks of CI surgery and CI use are often overstated by Deaf people who don’t use CIs, or who have older CIs but don’t use them. Damage to the facial nerve, meningitis, and botched surgery are risks, but they are low risks. Today, CI surgery is a fairly simple procedure and is usually performed outpatient. It isn’t brain surgery. It’s no more bloody or violent than other outpatient surgeries. And it doesn’t necessarily destroy all residual hearing like it used to. There are many CI users who have residual hearing in the implanted ear. Spreading false information about CIs does not make sign language more appealing; it makes CI candidates and their parents angry when they find out the truth. It alienates hearing parents who might otherwise be open to sign language for their deaf children.
– Deaf and hard of hearing CI users who communicate in both sign language and spoken language have almost no advocates. There’s plenty of advocacy for oral deaf and hard of hearing CI users who don’t sign. There’s also advocacy for greater understanding and acceptance of the signing Deaf community. But D/HH people who are part of both worlds and communicate in both modalities and languages have pretty much nobody advocating for our needs. We need you to listen and support us because using CIs does not make us immune to audism.

A Penny Saved is Agency Earned [Guest Post]

This week on the Weekly Wisdom blog, Randall Oldenburg teaches us about the benefits of financial planning (including budgeting, saving, and investing) for disabled people. Randall Oldenburg is a freelance writer and aspiring disability rights activist living in Minnesota. His current preoccupation is exploring the many relationships between personal finance and the disability experience. In doing so, he hopes to assist and inspire other disabled people in their own financial and existential pursuits individually and collectively.

A Penny Saved Is Agency Earned: How Basic Financial Education Is Helping One Man With Cerebral Palsy Stay Sane

For many people, doing a budget is a task reserved for the number crunchers among us. Doing a budget happily — that’s the perverted behavior of a masochist.

What follows is not an argumentative piece. This is merely the story of how I became such a masochist — not just a person who budgets, but also a person who plans, saves, and invests in themselves and their own future.

This is the story of how I received the gifts financial education has given me.

A Sense of Control

Cerebral Palsy (like other disabilities) has a tendency to take control from those whom exist with it as a feature of their lives. I am one such person.

I can’t control when my legs fail me and when they don’t. I can’t stop my hands from aching even as I write this, and I can’t stem the need to take frequent breaks to save my eyes undue strain. No matter how actively or rigorously I scorn these needs, they are still needs: I am routinely and viscerally reminded that I am not in control.

But in the world of personal finance, I rediscovered some of that lost control.

“Maybe I can’t drive to get groceries, but if I budget well, I can help buy them.”

“Maybe I can’t pay all of my medical debts in one swoop, but if I learn how debt works, I can make a plan; I can win the long game.”

“Maybe I can’t work 40 hours a week, but I can learn about business: I can learn to set up systems so that somehow, someday, I will be more than just a cripple who takes and doesn’t produce.”

“I can’t sleep at night because of the guilt. But someday — if I keep learning slow and steady — I will repay my loved ones. People to whom I owe everything, and who graciously insist no debts exist.”

These are the thoughts which echo, not always so coherently, off the walls of my mind — the thoughts that are kept in check by one thought alone: I am learning.

A Much-Needed Preoccupation

To those with Cerebral Palsy, chronic fatigue is sometimes a nagging aspect of life.

I will say, regarding the particulars of this topic, only that there are more days during which I feel useless, than days during which I feel useful.

In this context, learning about financial matters is not merely a means to an end — a reliable pathway to fast cars, fast lovers, or fancy watches. The quest to become financially literate is a much-needed oasis; a kind of “in between” state, wherein even a person such as I often am, a person with few spoons at any given time, might enter into the realm of the productive. By my lights, to learn is to produce.

Connection In Abundance

If you have read to this point, you may have had the following thoughts, among others: “Why is this guy so concerned with ‘producing’, and what’s so special about personal finance? Couldn’t you get these benefits from any other hobby?”

I will spend less time addressing these questions, which I am merely assuming in the first place, on account of the fact that my own experience has been the evidence for this piece thus far.

In my experience, the personal finance and business community is unique in many different ways.

Never have I been insulted by a member of the personal finance community, nor have I ever been told I shouldn’t or couldn’t participate merely because of my physical condition.

My questions are happily answered, my personal experience seems valued, and a small army is ready and willing whenever I have concerns about access to some resource.

In particular, the following YouTube channel’s have been great sources of connection: Roberto Blake, The Financial Education Channel, The Wild Wong, and The Financial Diet.

Most other areas of interest cannot boast such a general culture of helpfulness and respect, not just for disability, but for me as a disabled person.

It is for the above reasons that personal finance (in my experience) has not only been a source of control and preoccupation, but also a source of abundant and healthy connecting to my fellow humans.

With that, my other fellow humans, thank you so much for reading and letting me share my disability wisdom.

Follow Randall on Twitter: @TheRealRandallO