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The “With Autism” Series [Repost]

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

Blind in the City: Human Guide 101

“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

  • Before initiating human guide, find out if the individual wants to be guided verbally or physically. Sometimes just giving some verbal directions, or walking beside the individual without physical contact, is preferable, for instance if the individual is using both hands, or is uncomfortable with physical touching. If you are guiding without physical contact, stay in front of or beside the individual, and verbally let them know if you are turning (or simply have a conversation and they will follow your voice cues). Be sure to give the individual enough space to sweep their cane if they are using one.

  • In conventional human guide in the United States, the individual being guided will simply hold the guide’s elbow and walk a half-step behind, or beside the guide. If an adult is guiding a child, the child may hold the adult’s wrist. In different cultures, conventions for human guide may be slightly different.

  • You can have a natural conversation during human guide, and do not need to announce steps, turns, etc. since the person following you will pick up on those cues. Most people continue to use their cane or dog while being guided.

  • Never push, pull or steer a person’s body or their accessories (backpack, purse etc.), unless you know the person well and you know that form of guidance works well for them. In typical human guide, the person being guided is always in control of their movement, and they can disengage from the guidance at any time.

  • Variations: Sometimes two individuals may walk beside one another with elbows linked. This is not for guidance purposes, but to help the two people (both blind, or one blind and one sighted) stay together in a crowd. Occasionally, a group of blind people may decide to form a “train” with each person holding the arm or shoulder of the person in front, and a guide at the very front leading. This is not an efficient way to travel long distances, but may work well for very brief trips like guiding a group of blind people to a specific table in a busy restaurant. And finally, for two close friends or intimates blind or sighted, holding hands is a fine way to travel.

“Wait, so I’m like them? Awesome!”

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.

Read Diary’s post here

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.