My friend joked that they needed a bumper sticker that said “Autism is my co-pilot” since they were clearly driving with autism (as opposed to driving while Autistic.)
This weekend, I’m at the National Federation of the Blind of Virginia convention with 22 blind students! While I’m off doing that, I’ll leave you with this humorous piece about the limitations of person-first language. Be sure to get your gear if you’re a “person with autism” or know someone who is!
The “With Autism” Series
“Human guide” is a common term for two people walking together with one person guiding the other, or with both pedestrians physically connected in some way. Over my lifetime, while walking from one point to another, I have received human guide from many sighted people and some blind people. I have also guided some blind people and a few sighted people.
Many sighted people can be effective guides for blind people. However, the guiding process can sometimes be awkward at first. I’ve learned that awkwardness often arises from a fundamental misunderstanding of the purpose of human guide for the blind pedestrian. I hope to clear up confusion around the purposes of human guide in this post. I will then address some details of how to be an effective guide.
Purposes of Human Guide
A common acronym used in the blindness community is “O&M” which stands for “orientation and mobility.” Orientation involves identifying where one is in space, and figuring out how to get to a desired destination. Mobility is the mechanical process of moving to that destination and, ideally, avoiding obstacles or hazards along the way.
Most blind pedestrians use some sort of “mobility aid” to move through space independently. Most commonly this is a white cane or a guide dog. Both tools can effectively help the user avoid obstacles and follow a clear path through space. Most blind people without physical disabilities need relatively little help from others with the mobility process. We can manage steps, bumpy terrain, and other physical challenges without a lot of support.
Orientation is a different story, however. Typical sighted travelers rely on a variety of visual cues for orientation, including maps, street signage, and visual landmarks. As blind people, we often lack access to some or all of these orientation cues. We can learn to orient ourselves to a space over time, but when first visiting an unfamiliar place, human guide can be very helpful for orientation.
So although human guide can serve several purposes, the primary benefit is to assist with orientation and navigation. Human guides can share, through vocal or physical cues, information about which direction to travel, when to turn, and when a destination has been reached.
Sometimes though, people assume that blind people need help with physical mobility more than with orientation. Sometimes people may try to guide us in ways that control our movement rather than providing navigational cues. The most common example I encounter is the individual who tries to guide me from behind. This person may walk behind or very close beside me and attempt to steer my body with their hands. They may poise themselves to catch me from falling or to guard me from obstacles. This may be driven by the sighted guide’s desire to keep me in their line of sight. However, guiding from behind is not an efficient way to give me orientation cues. If I’m in the lead, and I don’t know the route, I am apt to miss turns or pass my destination. Furthermore, being pushed forward or from the side can disrupt my center of balance. If I do happen to bump an obstacle (that my cane misses for example) while being “guided” in this manner, the consequences can be quite dangerous.
Once it is understood that the primary purpose of guiding is orientation, then it makes sense that the guide will want to be in front. The person being guided can follow behind and will know to turn, stop, etc. when the guide does the same.
Notably, while orientation is usually the primary purpose of human guide, sometimes a good guide can also offer physical support, for example if the person being guided has a physical disability or limited balance. However, even in those situations it is usually most effective for the person receiving guidance to be behind the guide leaning on them, rather than the reverse. Good guides can also help with obstacle avoidance, but again, this is best accomplished when the guide is in front. The person being guided will model their own movement after what the guide is doing, such as stepping up or down when the guide is felt doing this action.
Tips for Effective Human Guide
They’d been going to the Buddy Walk for years, she said. They’d participated in conferences, and had been active in the Down Syndrome community. But even while they spent time with lots of other folks with Down Syndrome, they’d never really said out loud to Jessie that she had it too.
When they finally told her, her mom said, her response was, “Wait, so I’m like [this person we know] and [that person we know]???”
Her mom affirmed that yes, she was indeed just like them. And Jessie said, “AWESOME!”
I’ve been asked a thousand times how to tell our kids about their disabilities. This is how.
I normally don’t share posts from nondisabled parents of disabled children on my blog. I try hard to center the voices of disabled people that are too often drowned out by the voices of professed allies. However, I’m going to make an exception for Diary of a Mom, one of the most enlightened parent blogs I’ve seen. The writer has two daughters, one of whom is autistic, and describes herself as an intersectional advocate. Her posts reflect a humble understanding of what a healthy disability identity is, and what her role is as a parent and an ally.
Parents often wonder how to break it to their children that they have a disability. They may anticipate a variety of negative reactions to the news, or they may worry about their own emotions getting in the way of how they frame disability to their children. As this post illustrates, when parents expose their kids to positive role models early and often, the conversation can be a strong disability identity in the making.
To learn more from the perspective of a great parent ally, I encourage you to browse some of Diary’s other posts after you read this one.
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.
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.]