Do the blind understand what the sighted see?

Being an out-outspoken visually impaired blogger and author has one annoying side effect. I get asked the darnedest questions. 

The latest one was this zinger, "How do blind people know they are blind?" Taken at face value it's ridiculous and my first inclination was to give it a flippant, humorous reply that would put the assumption that blind people are stupid in it's place. But the inquirer followed up with a bit of explanation and I saw a deeper question in the botched phrasing.

How do little blind children know they are different from sighted children? How do blind people know about what sighted people experience through sight? Those aren’t such silly questions, so I let them have it.

When I was a baby and they found out that I was almost entirely blind, my parents decided that they would act like it wasn’t true or at the very least didn’t matter. We lived on 20 acres in remote, rural mountains in Oregon. We built our own cabin, grew a lot of our own food and rode long distances to a small school on yellow buses that made it up the gravel road most of the year.

Creative Commons image by Neticola Sny

I had two rambunctious brothers and my dad was always building something. There were hand tools, boards and debris scattered all around the cabin and beyond that there were the woods and the rocky high prairie. Many days in our middle childhood, we spent the whole day outside and didn’t come back until evening. We’d eat miner’s lettuce and camus roots or sit down under a pastured cow and drink milk right out of the udder.

I don’t remember realizing that my eyes were different. It seems like it was a fact that was always there. I could see some but very little. I ran after my brothers. I was a loud, complaining child and I was always yelling, “Wait for me.” They didn’t. I learned to keep up.

I don’t know when or how but I discovered that if I picked up pebbles and threw them ahead of me, I could run faster and avoid most scrapes. There were irrigation ditches in the lower areas that my brothers would jump across and run on without slowing down. I threw my pebbles, listened for how far I had to throw before they stopped dropping into the bottom of the ditch and then I jumped too.

I was slower sometimes. But not on a bike. I could see enough to make out the basic contours of the road and our gravel road was so rarely frequented that a car came along once in a few hours. And when one did, my brothers and I would not only scramble to the side but well off of the road, skittish as the deer.

So I had a bike, just like my brothers. One brother is two years older than me and one is four years younger. My older brother once rode his bike five miles to the tiny down of Summerville, population 250. I copied him the next day, insistent that he wouldn’t outdo me.

Then a few months later, I decided I would ride ten miles to the town of Imbler which was bigger. My brother laughed. But I got up in the morning and packed water and food. That was one of the first times I remember my mother showing any concern about what I did from a safety standpoint. She wasn’t entirely thrilled with the idea but didn’t seem to forbid it. My older brother jumped up from his place by the woodpile and grabbed his bike and rode off fast. I scrambled onto my bike and followed. He wasn’t going to beat me. We eventually agreed to cross the city-limits line together.

I wore huge thick, coke-bottle-bottom glasses to slightly improve my vision. Think of it this way: without the glasses I saw about five percent of what most people see. With them it was closer to eight or ten percent. My family obviously didn’t have much money and the glasses were worth an entire month’s income.

I lost them, of course. I hated the glasses for one thing. As a toddler I threw them away willfully. Later I lost them a couple of times because i put them down. The glasses were so heavy they carved red sores into my face. But by the time I was old enough to remember, I knew I had to have them and I didn’t resent them.

Whenever my family rode in a car, they were constantly pointing out deer, hawks and eagles as we drove along the country roads. I listened from the time I was a baby and there must have come a time when I realized that they were seeing things I wasn’t. I wanted to see those things too but there was never a moment when I asked to see.

Sometimes my mom tried to describe something like that to me, but I knew what a deer and an eagle looked like. I could see them up close in picture books. Of course, what I saw even there was indistinct and lacking in detail. I just didn’t know it.

I remember one conversation in the car in particular. My mother was talking about the new leaves on a tree with my older brother. I think they were discussing whether or not the leaves were healthy. This was at some small distance. I could see only fuzzy green blobs on the sides of the road where the trees were. I imagined that my family could see those blobs better. They could see their exact shapes and maybe some branches in them, like I could in a picture book. But I stopped my mom in the middle of the conversation and demanded that she not jump to conclusions about the health of the tree unless she examined it close up.

“You can’t possibly see the individual leaves, let alone what spots are on them,” I said.

There was silence for a moment. And then she told me somewhat sternly, somewhat in awe, that in fact she could. She said she saw each leaf, individually, etched against the background, each twig, each blade of grass. I thought about that for a long time afterwards. I couldn’t imagine. It seemed like it would hurt to have to absorb that much detail. The image i tried to imagine was so sharp it was painful.

I knew about blurry and sharp because I had the glasses. When I took my glasses off the world looked blurry. When I put them on the world looked sharp and clear and brand new. I was still seeing a world that was blurred beyond recognition for sighted people. If a sighted person suddenly saw what I see even with the best correction, it is unlikely they could walk even a few steps. It would be blurry, disorienting, distorted and lacking in all depth perception.

But to me, that was the best and clearest image I could imagine. I asked my parents how things could be clearer. They said they just are and that what I saw was actually still blurry.

I didn’t entirely believe them until I was nine years old. That was the year I first tried on contact lenses. Because they were closer to my retina the contact lenses could correct my vision a little bit more. I will never forget the moment I first blinked my eyes open in a doctor’s office and looked at the opposite wall. I had been to that office countless times during my childhood. My parents may not have wanted to pay much attention to my vision impairment, but they didn’t neglect my care.

I knew that wall all too well. It was green. Or it was supposed to be green, a kind of muddy, unpleasant green. But when I blinked my eyes open with the contact lenses in I saw for the first time that the green wall was actually a much brighter green. The muddy impression I got was caused by the fact that there were thin orange and purple stripes on the wallpaper. I had always seen it as one muddy color.

In that moment, I knew my mom was telling the truth.

Therefore, if there was ever one single moment when I realized how different my vision was all at once it was probably then. I got the contact lenses and could see a tiny bit better. Again the world seemed ultra crisp to me. Only going back to my old glasses at times made me realize that what I had thought was clear before had not been.

Creative Commons image by Mike Behnken

The older I got the more I realized how much other people could see that I couldn’t. They saw the blackboard at school and every detail on it. They saw details on people’s faces that allowed them to tell instantly which person was which, even if the people were the same height and gender and had about the same kind of hair. I could never see the details of faces and had a hard time understanding how people could recognize others so quickly and easily.

Later as an adult, I read about the special, neurological functions of the human brain, in which the exact specifications of human faces are prioritized so much that sighted people can tell minute differences not only individual to individual but in the same individual, the tiniest flicker of emotions or thoughts crossing a face.

I memorize who is who by painstakingly adding up what details I can get and cataloging them, like this: short, thin lady with the bouncy blond hair who has a tinkling laugh = Jane. Sighted people remember dozens of faces in that amount of time with their facial-recognition priority function. 

This isn’t just sight, it is specially enhanced sight made possible by the adaptations of our brains. Human touch and human voices are important to the brain, but there is nothing apparently with quite the power of eye contact. Looking into another person’s eyes is, according to science, profoundly important to humans. It supports social, psychological and neurological development.

Studies have documented the huge health problems experienced by babies in institutions, who do not receive enough human contact and no single, secure bond with a special caretaker. And one of the most important treatments for these problems is eye contact.

I have never known real eye contact, not the kind that imparts all those neurological benefits. My brain had to make do with the human touch and voice inputs, which can be enough if a child does grow up in a loving family. But not having known about eye contact from an early age, I did not behave “correctly” around sighted people. I didn’t look at people while they talked when I was a teenager. I would study my hands or stare off while listening.

No one really understood this or realized the difference. They just felt that I was rude and aloof. Those words were used a lot about me, though I was anything but aloof and desperately eager to please others. It was only when specialized teachers explained eye contact to me and trained me to try to aim my eyes at their eyes and pretend to make eye contact that things improved.

The exercise in faked eye contact is still exhausting for me because my eyes move erratically and it takes a lot of effort for me to get them to hold still and try to look like I am making eye contact. But like any other social courtesy it is worth doing, to show respect to the person I am talking to and to avoid conflicts.

Now after many years of study, I have a better idea of what normal sight is probably like. I have pressed my face close to video screens and watched expressions cross the faces of actors. I probably can’t see every detail, but I can have some idea of what other people’s expressions look like. I can see distant natural features and animals that I would otherwise not know in the same way--by looking close at photographs and using a magnifying glass. It isn’t the same of course. But there isn’t much else I feel the lack of.

I have experienced some amazingly beautiful sights and scenes in my life. Once as a young adult I had the opportunity to travel alone in Nepal. I went high up in the foothills of the Himalayas to a remote mountain-top village to deliver a letter from a Nepali friend to his wife and children.

I was still very good at navigating natural environments, camping out alone and all that, given that I grew up doing it. I slept outside the cabin of my friend’s family in my sleeping bag and in the morning I went out to the edge of a massive cliff to take in the sunrise and cook a cup of hot chocolate over my tiny alcohol-tab stove.

Before dawn the whole world was silver and blue. I could make out hazy ridge lines in front of me, jagged streaks of indigo against the silver, tapering down to the rose tinted mist above the plains of India to the south. To the north there were shining white peaks against an azure sky.

Then shivering streaks of gold, peach and pink began tracing out from the east like a painter’s brush bleeding into fabric. I watched in awe as the sun, emerged onto the horizon, like a jewel rising out of viscous honey. The light from it truly seemed to pour like slow liquid. Gold, rose and peach splashed over the ridges, turning the indigo lines to flame. The valleys and canyons were still dark and the mist that curled up out of them shown with color and light.

I am sure there are many details I missed. I missed the birds soaring in the canyon below me. I missed the leaves on the vines growing on the cliffs. I missed the detailed sparkling contours of the Himalayan peaks far to the north, that I could barely make out as white shining gods.

But what I saw was no less beautiful. And combined with what I heard and felt and tasted and smelled in that little village in a time and place in history when there were still little villages built with stone and branches with no electricity and no mail service… well, I experienced plenty.

I felt the rough grain of the wood under my hands, investigated the geology of the rocks, listened as the children taught me Nepali from their tattered school notebooks, ate the meager rice and lentils of the village, spiced with both sharp hunger and whatever the mothers put in it. And I never wanted for more.

I knew that I was visually impaired the way anyone knows their basic characteristics. You know your arms and legs and hair and senses. You learn your body, particularly if you live a physical and rugged life as a child. Later the tests of doctors told me exactly how different my eyes are. That is something no one could know without science and measurement. I had the good fortune of not knowing for the first several years of my life how the world would view me as different and lesser because of this minor physical difference.

Because my parents chose not to pay much attention to it, I gained an active, healthy body and great mobility skills and I lost a lot of early understanding of the social cues I was missing. It was a blessing and a curse. My mother now often regrets not paying more attention, not realizing how different the social experience of a blind person is, the lack of recognizing faces and expressions, the lack of eye contact.

And I agree that if I had the raising of a blind child, I would talk about that. I would train them in social courtesy and try to bring those key experiences in. But I would also let that child run wild too, as much as any child gets that these days.

I would never let understanding sight or what part of it was lost become a major topic or obsession. Because it is just one thing, one piece of life experience. And the others can and do make up for it more than society believes.

Political correctness, dismantling the English language or reclaiming basic decency

Donald Trump--with the help of a few like-minded fellows--has unleashed an on-going tidal wave of racist, able-ist and sexist muck by giving bigots a socially powerful role model. This may allow us to see who has been secretly resentful of modern realities, such as black people are no longer their slaves, disabled people appear outside cages and women can vote. But I'm not even sure that qualifies as a bright side.

At the same time, it feels like many of us are doing the equivalent of using Trump's famous paper towels to clean up Puerto Rico, dabbing up droplets that somehow splashed all the way to our homes in distant states. I'm going to get some flak for this from people I really do agree with on everything that matters, but there are times "political correctness" has become ineffective, has been hijacked by people with an oppressive agenda or has become a game piece for social jockeying. 

The term "politically incorrect" implies that the use of a word or idiom is a problem only because it is incorrect from the standpoint of politics, i.e. it wouldn't be a good idea to say that if you want to be popular. This is the reservoir that stored up all the resentment which fuels the tidal wave of openly bigoted remarks both in public and in private.

The irony is that the people who are now claiming not to be politically correct actually were the only ones being politically correct in the first place. They were refraining from saying things they truly believed in order to be socially acceptable.

By contrast, many of us were never politically correct. We didn't use the N-word because we felt it is disgusting and demeaning both to Black people and to anyone who uses it. We didn't use the R-word because it is filthy, and much more than an F-bomb, it actually does real harm to children in schools all over the English-speaking world. 

It isn't political correctness that should keep a person from using insulting, disgusting, demeaning, hate-filled and violence-inciting terms and idioms. It's basic decency. 

So let's call it what it is. When the use of indecent and bullying terms is labeled "politically incorrect," an implication is made that this isn't actually ethically wrong, just politically unpopular.

When I realized as a young person that the verb "to gyp someone" is a slur against Romani people, it was not difficult for me to remember not to use it ever again. It immediately took on such a disturbing connotation that I simply stopped, even though it was common slang used in the rural area where I grew up.

I learned some years ago about the origins of the rhyme "Eenie, Meenie, Miney, Mo"  in the slave trade and it only took reading about it once to make it very uncomfortable to me. It is not the disapproval of others that makes me cringe and redirect children in my ESL classes who start singing it, but rather my own understanding of the facts and my sense that it assaults the self-respect of anyone who knows its history. 

There is such a backlash against the concept of taking care not to harm those most often excluded with thoughtless words that it has become politically correct to insist that one is not politically correct. Put another way, political correctness is merely a term for what is believed to be widely supported.

This backlash comes, unsurprisingly, from some of the same sources as the current tidal wave of bigoted rhetoric. I recently ran across a list of mostly fake "politically correct" terms on the website of the far-right British National Party. The list was not presented as humor but rather as information to help readers avoid conflicts, and therefore implied that these terms were truly advocated in mainstream society. Mixed in with real examples of polite language, the list gave rise to many claims about how ridiculous the movement for inclusive language is. 

Among listings suggesting a person use "gay" instead of "homosexual", "sex worker" instead of "prostitute" or "homeless person" instead of "tramp," there are fictitious listings advising readers to use "ethically disoriented" instead of "dishonest" or "nasally disturbing" Instead of "smelly." The point is to manipulate far-right readers to believe an exaggerated and patently ridiculous version of inclusive language.

Unfortunately, this manipulation is made easier by some activists for social justice who don't differentiate between confusion, customary idiom and even honest ignorance on the one hand and blatantly harmful, hateful and bigoted terms on the other. If we equate a person not knowing whether another prefers the term "Black"  or "African American"  with intentionally racist slurs, we cheapen the experience of those who encounter the real deal. If we equate a deaf person being called "hearing impaired" when they prefer "deaf" with the R-word, we make it much less likely that disability activists will be taken seriously.

It is reasonable for a group to request that society refer to them by particular terms and refrain from others. Trying to comply is good manners, but not complying is the equivalent of neglecting please and thank you. It's rude if you know better, but it isn't the same as being a morally degenerate bigot.

Not everyone has equal access to information and social interaction. And groups are not homogeneous in their requests. Trying to politely use the terms a group requests is admirable and difficult. If a person uses a term we dislike but their intent is obviously not insulting or demeaning, that should be handled in a much different way than the use of intentional insults. 

The case of "blind"

I was recently asked to personally weigh in on one of these terms on a public forum. That was, of course, about the word "blind." While most deaf people and their organizations today have been very clear that they prefer the world "deaf" and do not like the term "hearing impaired," many blind people swing the other way, saying they don't like the word "blind" and would prefer the term, "visually impaired." 

In my view, abled people can be forgiven for being confused about this. I appreciate those who try to politely use the preferred terms of whichever group they are talking to. And I beg everyone involved not to make this into either the privilege olympics or a verbal fight. I appreciate our need to define our own identities, but let's not forget the fact that thirty years ago, when I was growing up, we were all mostly just referred to with the R-word. 

I was born legally blind and I have been active in disability rights organizations and efforts since I first learned to read nearly forty years ago. I have been a vehement advocate for the integration of people with disabilities in schools and for non-discrimination in employment. 

I have also been the target of just about every insult and slur against people with disabilities that exists in at least four languages. A stronger reaction to such insults, you won't find.

We don't need to stop pushing for respect just because we've rid ourselves of the worst insults. We can and should progress to defining positive identities for ourselves. However, what we are experiencing just now across the United States and around the world is a reminder that the bulwark against hate and bigotry is a barricade that must always be guarded.

There will never come a time when we can say, "The N-word and the R-word and their ilk are dead and buried. We can now turn to more subtle exclusionary terms and bury them the same way."

That is because they are a different species. "Retard" was used as a vicious insult. Several other terms were also used to put people with disabilities in institutions, sterilize us, deny us education and kill us. Those words, like the N-word and similarly vicious racial slurs are not even in the same dictionary as "blind" and "hearing impaired," which aren't and weren't widely used as insults and which have regular definitions.  

Sometimes "blind" is used as an idiom meaning stupid and ignorant. (Examples: “That politician is just a blind idiot.” "He was blind drunk.") There is no context here meaning something related to senses, just to intellect. This tends to equate blindness with intellectual deficits. If someone is stupid or ignorant or uneducated, call them one of those words, if you must. It isn’t cool or necessary to insult people with physical or developmental disabilities by comparing bigots, the willfully ignorant or bullies to us. Even if these idioms are often unconscious, they can be harmful over the long-term and it is reasonable to ask that they be avoided.

However, I can't personally support calls for the word "blind" to be discontinued in general in favor of "visually impaired." Some partially sighted people, especially those who have not been visually impaired their whole lives, really do object to the word "blind" and if I know that about them, I will try to refrain from using it around them out of personal courtesy and respect.

But it's a word with a definition that has not been profaned by common use as an insult. When it is used with technical accuracy, it has my support. And attempts to draw an equivalence between such a term and much more grievous abuses of language are unhelpful and potentially harmful. 

That's just the opinion of one visually impaired person. Due to my very poor sight--less than ten percent of the "norm"--I'm on that line where I could be called "visually impaired" or I could be called "blind." I often use the term "legally blind" if the point of the conversation has to do with official status as a person with a disability, rather than someone who wears corrective lenses but is not disabled. 

But if someone refers to me as "that blind lady who does herbs" or something of the like, I'm not offended and I don't see any reason to correct them any more than if they had said, "that blonde lady who does herbs." Both are technical descriptions and if someone in the conversation doesn't know my name, they are simply choosing the easiest way to identify me. 

The use of a term like "blind" all depends on the context, tone and intent both when using the word according to the dictionary definition and in idioms

I don't get on anyone’s case about using expressions like, “The blind decisions of the CEO drove the company into the ground.” It’s an idiom and the focus is more on the decision being "short-sighted" or lacking in long-range information, rather than on it just being stupid or unaware. Blind people are not stupid or unaware. We do, however, often lack visual information.

In a sentence like, “the blind obedience of the cult followers is creepy,” the idiom means that the followers don’t consider anything external and act ultra focused, as if they had blinders on like horse going through a tunnel. And yes, "blinders" is another thing that is just a word. I'm not going to stop saying "blackboard" or "whiteboard" if that is the actual color of the board. And I'm not going to stop saying "blinders," "blindfold" or "blinds" on a window. These are not demeaning and don't make people subconsciously think less of any group. 

If someone loses their glasses and laughs about being “blind as a bat” or gets new glasses and moans, “I’m going blind.” I’ll probably slap them on the back and chuckle, “Don’t worry. You’re in good company," even if their glasses are really nothing to moan about. The ability to laugh at one's self is a key survival skill.

But there are situations where the tone or context is hostile. I’ve had people say “I’m going blind,” as an excuse to deny me a seat close to the presenter at a workshop, when they just wear glasses that fully compensate for their minor vision impairment. I can’t count the times someone has lashed out with, “Are you blind or something?” when I failed to recognize their face or read an instructional sign.

I'm fine with the word "blind," in appropriate idioms, in factual description and even in good humor. I am also fine with "visually impaired." I am fine with the word "disabled." I prefer terms that demystify and inform without being insulting. 

I dislike euphemisms. I do not like the term "visually challenged," except in good humor. Vision isn't that much of a challenge. I just don't have that much of it. A challenge implies that if I just tried harder, I might be able to see more. Not gonna happen.

I also don't like the term "handicapped," which comes from a racing practice in which superior horses had to carry heavier weights. I know the term was used to denote people with disabilities as a way to imply that some higher power chose better people to deal with the difficulties of disability. I find the connotation unhelpful because it implies a justification or reasoning, rather than just the factual lack of a certain sense or attribute which is the fact.

I have always felt that actual disabilities are not the primary problem we face, but social stigma, reasoning and machinations around them. Let's keep terminology to the facts and keep society's interpretations out of it as much as possible. Those who argue that their issue with society is not a "dis-ability" because they don't lack any particular ability but rather have a different way of functioning are welcome to avoid the term "disability" and I'll still advocate for their rights to be respected as simply different. 

But not all visually impaired people agree with me. Some truly prefer the softer, euphemistic terms. To me they imply that visual impairment or blindness is something too horrible to say right out or conversely a challenge that I should just overcome on my own without society adapting at all. To me it is neither. It is a lack of a specific sense. It doesn't define the whole person, any more than some other single characteristic, but it is a piece of information that matters enough to be mentioned.

It is my hope that those asking for inclusive language changes can be kind, tolerant and inclusive when asking for them and not assume those who don't know mean harm. I also hope that time will change our language to be more inclusive and technically correct, rather than euphemistic.

We don't need to soften facts. We need to open-minds to the reality that those facts are not a curse.

Adopting a sighted guide on the train... or the ethics of helping strangers avoid corporate traps

What you pay for today is often a service rather than an item. But we are not always informed about what exactly the service we are purchasing is. Often as not, that lack of information is intentional.

As a small example, in the Czech Republic an new rail system was recently implemented that allows private companies to run trains on the Czech railways. These trains usually run at the most lucrative times of day and on the most frequented routes, leaving the less profitable village routes to the national rail company and causing some bitterness. 

Creative Commons image by Toshiyuki IMAI of Flickr.com 

For passengers, the problem is that for most of our lives we have been buying tickets at the ticket office and using them for any and all trains on the purchased route.

The only possible exception used to be express trains requiring an upgrade payment, but even those trains still utilized the base ticket you bought. It wasn't worthless. You just had to pay for an upgrade if you wanted to use the express train.

But now these private trains pull in to the same stations and travel the same routes and once you get on board you are told that your ticket isn't valid and you are required to buy another one from another company.

I have more or less mastered this system after a couple of confusing encounters. But many people, especially those who only travel at special times of the year, such as the recent holidays, are not yet aware. Recently I met an elderly woman on a train platform with frosty mist rising all around us. I wouldn't have noticed her at all, except that she helped me read a sign that was a bit too far for my shortsighted eyes.

It was a brief, polite encounter and would have ended there, except that later I noticed her colorful hat in front of me boarding one of the private trains. She sat down in the set of seats I wanted to sit in, so we sat together. I also noticed her pull out a Czech National Railways ticket. I was half expecting it and even with my eyesight the blue logo was clear when she laid it on the tiny fold-out table right between us.

"Excuse me," I said, my words rushed with urgency. "That ticket won't work on this train. Another train will be here in just five minutes. You've got to--" 

But the train jolted into motion before I could even finish my sentence.

The older woman started to rise from her place, her eyes going wide with anxiety. "How was I supposed to know?" her voice teetered on the edge of panic. "And what do I do now?"

I'd seen it plenty of times. She would be humiliated. The conductor would come and scold her for boarding the train with the wrong ticket. Then he would attempt to get her to buy a new ticket for the same price she had already paid. And if she couldn't or had the gumption to simply refuse, she would be put off the train at the next station.

That was the most reasonable response. I happened to know that another train where her ticket would be good was following just behind us.

But being legally blind, I am well accustomed to missing inconspicuous notice boards and being publicly shamed for it. It might not bother a lot of people. My husband sneers over such things and calls me "thin-skinned." But I just do not like being scolded. It's very unpleasant and I could tell that the older woman across from me felt the same way.

I heard the snap of the conductor's stamp on tickets just a few rows behind me and there was no time to explain.

"Sit down," I hissed at the older woman. "You helped me on the platform, remember? I'm legally blind and my pass says a guide can travel with me for free. You're my guide."

It's the law here. Even private companies have to honor it. I don't generally need a guide to get around, even though I only see about ten percent of "normal." But that primarily comes from a lifetime of adaptation and a lot of good mobility instructors. I know people with similar eye conditions who are very disoriented and do often need a guide. So the doctors and bureaucrats who certify such passes have little choice but to assign them based on technical measurements rather than subjective abilities.

I couldn't explain any of this though, not with the conductor suddenly right behind me. The older woman sat back down, her eyes wide and her jaw trembling just a bit. At the last minute I nudged her incorrect ticket under the map on the table.

The conductor turned toward us and I produced my disability card and paid for the private train ticket, giving a nod toward the woman to indicate that she was included. She never had to say a word. And the conductor moved off. 

I explained it all afterwards and sure enough, she was one of those people who rarely rides the train. She had been doing some rare holiday visiting and was confused by the dizzying new variety in trains. She didn't appear to have the energy for one of those spontaneous autobiographies that strangers exchange on trains or airplanes, so we sat mostly in silence for an hour and a half, until she got off at the stop just before mine. 

I had to wonder whether my action was ethically correct by current standards. She did help me but only in a very minor way. But to me the greater issue was that she had paid for a ticket and the companies should be responsible for providing adequate information for passengers. More than my right to adopt her as a guide, I felt she had a right to a transparent and fair system of payment that would not result in either extra charges or humiliation for understandable mistakes. 

"Welcome to Canada" unless you have a disability

Canada's appalling discrimination against immigrants with disabilities threatens to derail the country's enlightened track record. The long-standing ban impacts professionals, children and anyone subjectively believed to be a potential "burden," causing families to be denied reunion and stunned individuals to be subjected to significant hardship. 

My husband and I both love a spirited political discussion, so it's good that we agree on a lot of things or home life could become contentious. But there is one place where sparks fly. That's--amazingly--Canada. 

My husband's argument is by his own admission emotional and irrational. Sixteen years ago, he went to the Canadian embassy to apply for a visa as a Czech citizen because we were traveling to the US--in part to get married--and he wanted to go look at the beautiful mountains near Calgary on a road trip. He already had a year-long visa to the US (no small feat) and was confident that the Canadians would give him one as well. 

Now, I'd like to point out that my husband has never been known to put out an arrogant or abrasive vibe. Everyone who knows him will vouch that he is--unlike me--well versed in diplomatic behavior and expression. But I wasn't there, so I can only take his word for it.

The Canadian consul took him in for an interview and at some point asked--rather acidly, he says--if my husband simply assumed Canada would issue him a visa, because the US did. My husband replied "Yes, I think you will." And his visa was denied. 

I was shocked. This is simply not the Canada I know as a friendly and overly polite northern neighbor. But George W. Bush had just been elected and I was fairly sure that the complaints of an American fiancée could only hurt his case under the circumstances. 

So, we didn't go to Canada for the road trip and my husband has never forgiven them. Any time Canada comes up in political discussion he is uncharacteristically sarcastic and negative.

And Canada comes up a fair amount because we are both very critical of most US imperial and corporate-welfare policies. I was brought to tears of gratitude when Canada refused to forcibly return a few American soldiers who fled there to escape being deployed in the ridiculous and often marginally legal wars in Iraq and Afghanistan. I have also heard plenty of stories of Americans going to Canada to buy desperately needed medicine at reasonable prices. And watching the actions of Canada's marvelously diverse cabinet--particularly when they announced that they would take in thoroughly vetted Syrian refugees rejected by Donald Trump--is a delight and a rare breath of fresh, piney air in these stifling times. 

I've always vehemently stuck up for Canada in discussions with my husband or anyone else, which is why the news that Canadian immigration policy flagrantly discriminates against the most vulnerable possible group--children with disabilities--hits me like a sucker punch. 

An article in The Washington Post explains that Canadian policy means in practical terms: "Families can be rejected for having deaf children and spouses can be denied because they use a wheelchair, a practice too harsh for even the United States’ difficult immigration system." And this long-standing policy calls into question precisely how honest the Canadian boast of welcoming refugees from war-torn Syria, where many will have been injured, really is.

The article goes on to list horrifying case studies of families denied reunion or exposed to extreme hardship, due to a member with fairly minor disabilities. A German woman, with multiple sclerosis--a condition that can be fairly mild and is certainly not contagious--who married a Canadian man was denied a residency permit. A family was even stopped at the airport in 2008 after their immigration from Britain had been approved because their daughter had an apparently visible genetic difference. The family of a Costa Rican professor hired by Toronto University was denied residency because of a child with Down Syndrome.

I have to say, flat out, that in the year 2017 this list--and it goes on in The Washington Post--leaves me breathless and gagging. And it makes me look back again at that moment when my husband was denied a visa and wonder if behind the humanitarian and progressive face presented by Canada there actually lies a smug, entitled and ultimately self-serving heart, as he has always maintained. 

Photo by Larry Dickerson

No, those are not Syrian refuges. That's me in the red coat in February or March 1980 in northeastern Oregon. Note the super-thick glasses--definitely not admissible to Canada, even today.

You see, before I was an American (yeah, it took a month for them to file my birth certificate so technically there was a before), I was a child with a disability. My family's house burnt down while my mother was pregnant with me and my family, including my then one-year-old brother lived in the back of a truck through one snowy, mountain winter. I was born in the spring in the loft of what was then a one-room cabin built by hand around that truck, the fresh-cut boards still smelling of sap. 

And my mother, having endured all that and living in physically harsh conditions, then found out that her new baby was blind. 

We weren't immigrants, but given all that had happened, we didn't look much different from your standard refugees. 

And no one could have predicted it then, but I became an immigrant 22 years later--to the Czech Republic, which--soon after I came--joined the European Union. 

And the comparison to Canadian policies could not be more striking. 

As an immigrant in the EU, I was officially classified in the worst of four possible categories of disability, though I technically have some sight. I once ran into overt discrimination because I was an immigrant with a disability and that was from a doctor who refused to issue me legally mandated medical documents, because she did "not believe foreigners should get the benefits of society" even if they pay the same taxes as everyone else. I dumped her in our wonderful European single-payer health-care system and got another doctor. Problem solved.

Many terrible things have been said about the notorious Foreigner's Police in the Czech Republic and yet astoundingly after 20 years of dealing with them I have never felt that they discriminated against me because of my disability. Far from it. While their 12- and 18-hour waiting lines and their occasional collusion with the Ukrainian mafia are egregious, they never seemed to notice my white cane.

Not only did I not face discrimination from Czech or EU authorities, I was given the same benefits of society that a citizen has, as soon as I had the equivalent of a Green Card as the spouse of a Czech and EU citizen. And I was even given disability accommodations when I took a citizenship test after fifteen years as a permanent resident to assess knowledge of the language and culture, because--surprise surprise--Czech officials actually cared more about whether or not I, as a prospective citizen, had truly integrated into their country and become one of them than they did about my physical difference.

Having seen a thing or two in my time in many parts of the world, I was always waiting for the discrimination shoe to drop. But it never did. 

I'm not a big tax payer, but it's hard to say whether that has more to do with my disability or with my profession as a writer. My husband pays a full share and I make a lot of his work possible. I am an exceedingly good bet for the Czech single-payer health-care system, being extraordinarily healthy. My disability has only once required medical attention and that was for cataract surgery, which eventually affects more than half of all adults. 

Oh, and then there are the savings the state has gained since I adopted two infants from an orphanage that the Czech state would have otherwise had to support for 18 years--given that they were considered "unadoptable" due to local ethnic prejudices. I never had to pay a cent for the adopdtions (for the record) and I also never got a cent for taking that burden off of the Czech state. I did get a family and a country that welcomed me, however. 

And so for once, I stand in awe of my good fortune--the simple luck that I am in the EU and even Eastern Europe, rather than the much admired land of Canada.

And to Canadians I want to say this. You have my heartfelt thanks for giving sanctuary to American soldiers forced into illegal situations. Thank you for taking in refugees, including refugees from my adopted country the Czech Republic, when ethnic tensions, violence and rampant discrimination here caused thousands of Czech Roma to flee to Canada. You complained and sent some back, but some were able to stay and thus escape a different form of discrimination--racial discrimination--here.

None of us are perfect. But this policy of blatant discrimination against people with disabilities is disgusting, unwise and ultimately self-defeating. You are an enlightened society and can easily absorb the fact that people with disabilities are no more likely to be a "burden"  to your society than any other group of immigrants.

For centuries, uninformed and misguided policies around the world have called immigrants in general a burden. And nation after nation, that opened up to immigrants and enjoyed their energy and industry has shown those exclusionist policies to be simply ignorant. 

The same is true of societies that have opened up to full participation by people with disabilities. Such openness has only ever helped a society and boosted economic growth.

People with disabilities are different. That's true.

But given access to the same rights as other people, we have never been a burden. Just as we are different, our contributions are outside the norm and often therefore in areas others would not have gone to address needs in society that otherwise would have been left wanting--such as my adoption of children considered un-adoptable by locals. 

Canada, this policy is beneath you. Fix it. Please.

Blind humor: Living with a sighted person

I break from work in the afternoon and go downstairs to brew tea for me and my mother. The electric kettle sputters and pops with a comfortable, homey sound.

I reach up to the second shelf and snag a couple of pottery mugs. My thumb and ring finger go around the handles and my forefinger and middle finger each go inside a mug. It's a quick grab and a secure grip. 

Image of Arie Farnam with long light-colored hair unbound and eyes closed as she looks into a fire at night

The mugs clink as I set them on the counter but then I feel the grime and stickiness on the inside and I pick them back up again.

"We need to check the spinning arm in the dish washer again," I tell my mom, as she comes in from her painting work.

"Whatever," she says with emphasis. "They look clean to me."

We've had this conversation a thousand times and I try not to bristle. I try to remind myself that it isn't exactly that she doesn't believe me. It's just a different way of looking at the world.

"There are fairly large chunks of greasy gunk inside the cups," I tell her, while I scrub and then add soap and scrub some more to get the super-heated dishwasher sludge off of the inside of the mugs.

"I believe you," she says. "It's just that if it looks clean visually, I don't care." 

I bite back a retort about how bacteria don't care what she can see and put the newly washed mugs out to pour the tea. 

This wasn't a crucial or dramatic incident nor was it the straw that broke my back. But it was telling and clear. I suddenly realized that there is an art to getting along when we see the world differently. And so, I started mulling over a list of tips for blind and partially sighted people who live with a sighted family member or roommate. 

Some of the common issues can be humorous, but I do mostly mean what I say.

Image of a red tea kettle blowing clouds of steam - Creative Commons image by Benjamin Lehman 

Tips for living with a sighted person:

1. As noted above, dish washing and other things requiring attention to invisible hygiene are not their strong suit. When I pick up a mug or a spoon, my hands automatically inspect it, I suppose just the way a sighted person's eyes do. But my hands detect a lot of crud that a sighted person's eyes don't. Sighted people are, however, excellent at dusting shelves, vacuuming and mopping floors. Divide up household tasks based on each person's strengths to minimize the need to correct and the incidence of food poisoning. 
2. Try not to lose patience with their vague sense of location and statements such as "It's over there." Remind them gently to use specific words, and set a good example by giving them cues they can follow when directing them to find objects. This generally means referencing a significant physical object that they can see when you are giving them directions. Don't say for instance, "Your keys are at four o'clock three feet ahead of you," because they will often find this too technical and confusing. Instead say, "Your keys are behind the coffee pot." I know it may feel counter intuitive, but this can ease communication.
3. It is a generalization but also often true that many sighted people have poor organizational and memory skills. Due to their reliance on visual cues they haven't exercised the muscles of memory and categorization. This is a common sticking point in household conflicts because sighted people have difficulty using organization systems for clothing, cooking utensils, spices, paperwork or household clutter correctly. Again patience is needed. Explain the need for the organization systems that keep your home running and which keep them from having to do all the housework and cooking without your help. Then remind gently and avoid a critical or irritated tone as much as possible.
4. While floor clutter is related to the point above, it deserves its own point because of the potential safety hazards. Your home is one place where you can move around freely and quickly. Floor clutter destroys your sense of home and makes the daily routine difficult and even dangerous. Sighted people, particularly children, create floor clutter without even noticing. Believe me when I say that it is not specifically intended to hurt you. It is just more of their difficulty with organization and location concepts. Place a large box in an out of the way corner and then unceremoniously dump any and all items found loose on the floor into that box. When someone is looking for lost items, mention the box and patiently repeat guidance on organization and safety. 
5. Be clear about personal space. Though it may be fashionable today to have a relaxed atmosphere around belongings and space, your time has better uses than searching for the scissors your family member or roommate put "right back" on your desk... two feet from where you keep them. Don't let this one slide. But as usual, exercise patience. It is genuinely difficult for sighted people to grop how exact they must be in returning things they have borrowed from you or moved while in your personal space. Generally it is good to enforce a rule that your things are not to be touched or moved at all. Have your own pair of scissors and all other handy household items. Then enforce a hard and fast rule that yours can only be borrowed in cases of emergency and then must be returned to your hands, rather than to the place the sighted individual believes is correct. 
6. Childcare deserves a couple of special notes. First off, it's clear that children can create a lot of clutter and chaos. This is their natural state. Get child locks on everything and put everything up high for as long as possible. Then as children get older, use the same principles applied to sighted adults with an extra dose of patience. Sighted children are actually more likely than sighted adults to fully adapt to your home and abide by the house rules, because if they are growing up with you, they are more likely to learn the same skills you do and accept them as normal.
7. On sharing childcare with a sighted adult: With small children safety is your top priority, but you've heard the phrase, "out of sight out of mind." Sighted people really mean it and especially when it comes to children. Some particularly annoying sighted people will question your ability to "watch" children and keep them safe from visible hazards. (Sarcasm and irony are much more helpful, not to mention legal, than aiming your fist at the place where their noise is coming from. But I digress.) Society and the media has trained them to believe that they, not you, are better equipped to keep children safe. Don't buy into this or your children may suffer from preventable accidents. Just because a sighted person is present, don't assume they are paying full attention. If you hear a match strike, batteries clatter or a chewing sound from a toddler who isn't supposed to be eating, always investigate. The child might well be hiding under the table or just around a corner and a sighted adult may not notice because they don't pay much attention to sounds. I can't tell you how many times I have relieved a child of choking hazards when sighted adults hadn't noticed, not to mention the three times I've pulled a drowning child out of water before sighted people reacted. The general rule is to keep alert at all times with small children.

I have written this with the hope of bringing awareness to the issues. I don't wish to give offense to anyone

There are many articles in the online and print media detailing what it is like to live with a family member with a disability. Some are meant to educate the general population and others offer necessary practical tips for families. I'm not against these articles. I do believe there are particular issues for people living with a person with a disability and good advice that can be exchanged with others with a similar living situation.

However, I couldn't resist telling how it is from the other side of the equation.

I wish you all luck and harmony in your homes.

Surviving the new reality

Rain drums on the roof as I write. I am on enforced rest. Doctor's orders. I could cry for joy over the rest, except that the eye surgeon has forbidden me to express intense emotions. 

But you get the idea. I don't feel sick but I'm supposed to stay inside, keep warm, not work much and be at peace. I know, I wish I could spread it around a little too.

The only downside of this is a feeling of vulnerability that comes with the isolation.  I hesitate to venture out much, even on-line. I am a bit breakable and the world has suddenly become doubly harsh.

Creative Commons image by Sepp Schimmer

I saw a post from an old work colleague about attacks against people of color in the US. I wrote in a quick reply of support and bittersweet humor. And instead of solidarity, my old office-mate lashed out at me, labeling me an "sheltered white expat." 

I instantly had the urge to fight back. I'm not one who takes things lying down or turns the other cheek. Sure, I'm white and I know better than many white people what privileges and protections that entails. I am highly aware when I meet police officers that I am wearing the backpack of white privilege--then and many other times. I also know that when any country is in the grip of fear that there is an understandable anger toward emigres--those who left, no matter how good their reasons. 

On the other hand, I'm also a person with a significant physical disability. I'm up against the wall in this too. My children are not white and they are newly naturalized citizens. Will we ever be able to go back to visit my home and family again? That is not an idle question in these post-election days. We are also in a country (the Czech Republic) that Donald Trump has pledged to put a military base in. We are isolated for the moment, but far from off the hook. 

Still, I bit my lip and said none of that. I know well the furious emotions raging in my colleague's post. I replied only to express more simple and direct support for her. I told her I am an ally and I understand her words. She and another friend continued to express anger and rejection toward me. There was no reconciliation. 

I am worried.

I'm saddened to lose a connection to someone I enjoy simply due to these terrible times. But I am even more worried by what this negative interaction among allies means for our people--the people of our country, citizens and non-citizens, all cultures and all backgrounds. We're stuck in this together, after all. 

My home county in Oregon reportedly voted 67 percent for Trump. There are people I call friends who did and likely even a few only moderately distant relatives. And if I cannot meet a friend who agrees with me in support and solidarity, if we are so divided that I am the enemy even when I am not across the political divide, how... oh gods, how will we live with those who really do hate and choose a hateful leader? 

Let's take a moment to forget that Trump even exists. 

Sigh. Now doesn't that feel better? 

But wait a minute. There's a problem. We've made Trump disappear but we haven't made the many people who vehemently support him disappear. Sure, we can say they are a minority, as few as 20 percent of the nation and not even most of the voters. But they are enough and we have to live with them, Trump or no Trump.

I have always felt this because of where I grew up, far from the cosmopolitan and high-thinking coasts. I love visiting Portland, Seattle, New York or Francisco for precisely this reason. Our bubble of acceptance and freedom feels so good. 

But we forget that this is not all of the nation at our peril. We ignore rage at our peril. We belittle politically incorrect antagonism at our peril. We've seen that now.

I know it is hard to think about surviving the next four years. But we will... most of us at least. And here is how I propose to do it:

Creative Commons image by Peter Roome

• If there is a registry for Muslims, get on it. I'll be a Muslim on paper.  If we're all on the list, the list will have no teeth.
• Talk to Trump supporters. Really talk and listen. Listen to what motivates them, what they are upset about. Share your thoughts with respect and without contempt.  They are people and most people are susceptible to change, even if slow change.
• Promote facts, everywhere, over and over again. The media will not help, so we have to do it. Talk about facts, post them, remember them, make lists. Don't let up about climate change.
• Explain white privilege, primarily if you're white. Explain it again and again and again until you're sick of it and then explain it to more people. There is no way we're as sick of explaining it as Black, Hispanic and Native American people are.
• Talk to the person no one is talking to at a gathering. Invite the disabled colleague or classmate to whatever. Connect. 
• Make your circle bigger. Whatever it is you can give easily, put it in. Got a neighbor with younger kids who could use some of your nicer used clothes? Got extra veggies from the garden? Got wood or materials or whatever? Buy less, trade more, reuse more. Gain your security from community.
• Take care of your own basic needs with as little resources as possible. Reduce plastics and fossil fuels in whatever ways you can. And remember you'll do more and better if you're rested, healthy and fed. Don't wait to be taken care of. Stand strong, think ahead, link arms.

My hope is with you. 

Passing through change

I woke up from anesthesia with the sensation of having slept a long time, though it was probably no more than an hour and a half. My left eye was covered with a hard plastic circle taped very securely to my face. I had oxygen tubes in my nose and various things on my arms. My mother, who came all the way from America to help me with the kids while I recover, said I looked like the Borg. 

For nearly twenty-four hours, I wasn't allowed to take off the patch or even peek at the world. My husband joked that the surgeon had probably removed my eye for experimentation. I could see after images pulsing in the eye for hours.

Creative Commons image by Lolaa of Flickr.com

Then late at night, after all the nurses had gone away and my hospital roommate had finally gone to sleep, my left eye began experiencing flashes of light at the lower periphery. That is one of the major signs of retinal detachment. 

For a moment, I was seized with terrible fear. I thought of calling the nurse, but these were general nurses from a hospital word specializing in nose and throat disorders. I had told them before about the throbbing after images and they were kind but expressed no interest or knowledge about eye conditions or warning signs. I knew they would not do anything before morning. 

I had also been told that stress, including fear and anxiety, was the surgeon's primary warning in terms of risk factors. He wanted me to stay calm and stress-free to avoid dangerous inner eye pressure for two whole weeks.

Somehow I lay still in the darkness. I thought about my conviction that I must go through the the dark time, including the fear. Once I got up to look out through a slit in the blinds at the super moon with my very blurry, unoperated, right eye. Then I lay back down. And finally I slept, mainly thanks to the after-affects of anesthesia. 

In mid-morning, I was able to talk to the surgeon again. The light flashes had subsided and he was not concerned. He tore the tape off of my face and I blinked my sticky eyelashes open.

This surgery was not meant to cure my vision impairment, but rather to keep it from getting worse. It entailed getting rid of cataracts and implanting a lens--much like my high powered contact lenses but inside the eye--making contacts no longer necessary.

My first impression was still blurry and then strangely shortened and squashed. The surgeon's fingers were unnaturally wide and stubby as he held them up for my inspection. But eventually the image stabilized a bit... yes, clearer than before.

As a child I used coke-bottle-bottom glasses that let me see a bit more clearly. Then when I was nine, I was introduced to contact lenses in a doctor's office. The contacts had much greater optical power than can be had with glasses and I was startled to find that the wall on the other side of the doctor's office was striped, rather than a solid color, as I had always believed. 

This wasn't exactly like that. I could see no further than I had before with glasses or contacts, but this was without such aids. I could see the broad smile on the surgeon's face, at least enough to know he was smiling. Though I noticed that even after the picture acquired reasonable dimensions, everything still looked a bit blue. 

At first I wondered if they had given me a tinted implanted lens. But when I turned and saw the sky through a window, the difference became more clear. The bright light and the motion sent twinges of pain into my left eye, but the sky outside was a pale, sparkling blue.

The other eye--the one that had not changed over night--saw an ugly grayish yellow haze, like the smog of a Bohemian winter, in fact, it was bad enough that it reminded me of the first time I came here in 1992 and the Communist-era coal plants were belching out soot and coloring everything that same sickly grayish yellow.

I tentatively asked what color the sky was and was told that it was white--high clouds. Both of my eyes were wrong.

I was sent home to lie in bed and recuperate from the poisons in the anesthesia and from the surgery itself. I have a lot of time to ponder the color of the sky. 

The grayish yellow was likely caused by the cataracts. The sky was also dimmer in that eye. The blue... well, it is somewhat of a rule that when you suddenly see things from another perspective or through another filter--whether that is physical or, say, the psychological filter of a major political change--you tend to lean extremely to that side in your perception. It has to do with what you consider to be "normal."

In the world of optics and photography that is called white balance. It's the concept of "normal."

Until the moment the patch was taken off, I had seen one way for so long that once the window was clean, my brain no longer knew what normal was.After several days the effect is fading. My brain has adjusted the white balance for each eye separately, so the world looks pale gray again--the ordinary Prague winter of 2016. 

I light a candle on the window sill and sit up in bed. The evening light is dim enough that the light of candle and the dusk don't hurt my eyes. I see two candles now, one almost a real candle, a little spark outlined against the gray, dancing just a bit with the movement of the air.

The other candle is the one I have always seen in the early morning or late evening, when I don't have contacts or glasses on. It is a fuzzy fractured ball of blur, mashed to the left a bit with a break in the middle and several times larger than the actual candle flame. 

That candle, the candle only I have ever seen, will be gone forever soon. Whatever comes, if the surgery takes hold or if--by some unexpected chance--delayed shock causes retinal detachment, either way after the second surgery, I will never see in that old way again. 

A small pang of sadness rises, inexplicably inside me. I have no great love for my extremely blurry vision. I don't see that way most of the time anyway, because I wear some form of correction almost every waking moment. But I am surprised at the associations I have with that soft, squished and fuzzy world. It makes me think of rest, nighttime waking and comfort when I'm sick. This is probably because it is only when I'm in bed that I didn't wear glasses or contacts. 

Now I feel a niggling reminder in the back of my mind. The clearer eye makes me think I need to take out a contact lens. Somewhat clear sight in bed was always a sign that I had forgotten something important.

I am sure I will learn to be comfortable with these different eyes. There are many things that will be easier. I won't have contacts to take out when I go swimming. They won't itch. I won't have to religiously schedule the hours when I can safely wear the thick contacts and those when I have to wear the inferior glasses to protect my corneas. It is not hard for me to explain to my inner self why the new way is better.

And yet it is still there, the little sadness for a way of seeing that will soon be forever beyond reach. 

People have often asked me how I see. It is hard to explain how I see with contacts, because that is the best I have ever seen. To me the answer is that I see clearly. It looks clear to me. I simply don't understand how other people can see things at a distance that I can't. Ten feet is just how far clarity extends. Sure, I know in theory--from physics that other people can see further but it is hard to imagine.

On the other hand, I can explain a bit how I see without contacts, because that too me looks blurry, soft and distorted. But now it will be only something I explain to others, not something I see. Over time, I will forget the way the world looked from there.

There are some in the disability community who argue that "disability" should not be called that at all. It is only a difference and should not be considered lesser or a lack. This is strongest among the deaf, who have their own language and community and as long as they don't have to deal with the rest of us, they are quite happy and don't feel dis-abled at all. They don't miss sound. 

In that way of thinking, my vision could be considered just different. It does in fact have a few--if minor--technical advantages. My extremely nearsighted eyes before the cataracts and the operation, could read very tiny print, inspect finger prints and so forth. I would sometimes take off my glasses in order to use my eyes as a natural magnifying glass.

But the cataracts put an end to my excellent close vision and made it easier to part with that blurry and fractured world that meant comfort, drowsiness and rest.

I am ready now, ready to move forward and to change. I have truly acknowledged what I am leaving behind.

Fear of need... or the problem with visible disabilities

It has recently become almost fashionable to talk about the issue of invisible disabilities.

Well, praise Gaia! Finally a fashion that is helpful!

Still I have recently received a bit of a shock to my view of the divide between invisible and visible disabilities. 

A little background... As long-term readers of this blog will probably recall, I started using a white cane regularly about ten years ago. I spent a lot of years before that "passing" for fully sighted, even though I'm clearly legally blind. Then in 2004, my husband and I moved to a small town outside Prague and I started teaching English and translating as a private business. I had to forge relationships in town and the invisibility of my disability presented a problem. 

Several people told me they were offended that I didn't greet them from across the road. Others mentioned that I didn't use eye contact and smiles to show who I knew in a group or that they initially assumed I was developmentally disabled (using other terminology, as you can imagine) due to the strange look of my eyes.

A picture of my actual famous scooter. Image by Arie Farnam

I started using a white cane because I thought it might help to clue people in to the real issue--that I simply can't see much. Soon I noticed quite a few benefits of the cane, even though it made me feel uncomfortable. People in stores were much more helpful when I asked a question and crossing streets stopped feeling so much like risking my life. 

In 2009, we brought home our first child and things changed dramatically. While I had used the cane a lot before, I now used it constantly. With a baby, I just couldn't take any amount of risk at intersections and it was around this time that a legally blind friend of mine was run over and nearly killed.

Still, somehow social relationships didn't improve over the long-term. The cane helped a bit with the social offense and confusion over the categorization of my disability, but not as much as you might imagine.

Soon the neighbors and acquaintances who initially seemed more willing to give directions or say "hello" retreated into guarded silence. I continued to say "hello" to everyone I met on the street. It's local custom in this country, but as the years passed the answers I got became gruffer and less friendly. Our circle of family friends narrowed to... mostly people with some sort of disability. I started to wonder if the cane was such a good gamble.

Fast-forward to 2016. My eldest child is nearly eight and the youngest is six. They are learning to cross roads safely. But more importantly, my bone and joint problems are acting up. I have always had crooked and funky bones in my legs and feet but compared to my eyes, it never seemed like a big priority. This year, however, with the kids attending two different schools and my husband in a higher pressure job than before, I have to do a lot of fetching and dropping off.

With soccer practice and my own teaching jobs in the mix, I can easily end up walking four or five miles on pavement every day. And neither my knees nor my feet can take it. I've always dealt with a fair amount of pain in my feet, but I never realized it wasn't "normal" for walking distances to be that uncomfortable. Now it is beyond "a fair amount" and worse than that it escalates day after day. My feet take more than a few days to heal from one five-mile day and these days five-mile days are every day.

The upshot of all this is that I ditched my cane this fall and I've been riding an electric scooter.

What? You go from blind to motorized without any actual change in your vision????

Essentially, yes. I was never carrying the cane for its ability to find walls... or even the thicker variety of lamp posts. I was carrying it for social cues and traffic safety. And I drive the scooter very slowly and only in areas that I know so well I could walk without a cane and with my eyes closed.

That said, I was pretty nervous when I first got the scooter. Neither my husband nor I could figure out how we were going to handle all the transportation of the kids this year with his job, so we decided that it was a necessity. But still I was sweating pretty heavily the first time I encountered people I know in town, riding on the scooter a day after having been downtown with my white cane.

Do you want to guess what happened? A wild flying guess?

Absolutely nothing. 

My acquaintances greeted me cheerfully. I did my errand and returned home.

The next day I went out again, still nervous but excited at my new ease of mobility. The electric scooter is a far cry from a wheelchair. It does not look like something only a disabled person would ride and it has a very small physical footprint. You can fit on narrow medieval sidewalks with it and in many of the same spaces where walkers go. I can't use a bike well alone in the same way simply because bikes are too big for our tiny sidewalks and riding in traffic isn't an option. Also bicycles require a certain minimum speed to be stable. This scooter can really crawl and still maintain balance.

Over the first few days, I started to wonder about the new cheery mood that seemed to have swept through our little, often grumpy town. People who usually greeted me before, now do so with gusto and many people who had not greeted me previously started returning my greetings. The elderly ladies I often encounter on the way to town who used to glare at me and mutter before, now greet me with a chorus of chiming voices. I had to wonder if someone in town was making hard cider from the fall apples (and if so, where I could get some).

Keep in mind that I can't see people's expressions from any reasonable distance, so I could not tell if the cheerfulness (or the previous grumpiness) had anything to do with me. But as the weeks have passed, I have been astounded by reactions to my scooter.

Despite my initial anxiety, not one person has accused me of "faking" my vision impairment. Not one person has complained to the local police about my scooter taking up space on the sidewalks. And three people have stopped me to ask where they can buy such a scooter--one woman running desperately for two blocks to hail me because she has also been developing joint problems and she said she felt her heart leap when she saw me glide serenely by--uphill no less. 

Several people have randomly commented on how nice the scooter looks and how helpful it is to me. When I apologize for taking up a particularly narrow sidewalk and scrunch to the side to let walkers pass I am often met with protestations that my scooter is "wonderful."

This has all been very pleasant and continues to be. But finally my husband got to the bottom of the change when he overheard someone saying how uncomfortable it made them to see me with a white cane. They felt helpless, not knowing how to help and yet they had a nagging feeling that they should somehow help "the blind lady." Now they see the scooter as having saved the day. No one seems to get that the scooter is not a guide machine of any kind.

They don't care. They suddenly don't see a person with a disability anymore and they feel better for it.

And that is a sobering thought for me.

I have lived much of my life straddling the line between a visible and an invisible disability. But there are many people who can never pass for non-disabled. I feel a bit like John Howard Griffin, the white journalist who went undercover as a black person in the Deep South of the United States in the 1950s. I get to experiment with seeing life from an isolated perspective and I get to return again to the "living." 

But what is it that causes people to react so intensely (and so negatively) to visible disabilities?

There is a fear that is innate to our human DNA--a fear of helplessness. We fear being the outcast or being the person in need. And to see a person we believe is outcast and in need brings that fear up, just under the surface.

Then too there is also the feeling that one probably should help someone who is in what the temporarily able-bodied often consider "a terrible condition," even if the assumption that a visible disability must be terrible is erroneous.  Obviously people with visible disabilities often don't need anyone's help just at the moment that you happen to see them on the street. They are just as likely to be routinely going about their business as anyone else. 

Most of the time I fit that description. 

I am glad to have discovered another technology that dispels some of the fear of physical differences. Still the core issue remains. A person's appearance is a very bad indicator of whether or not they need help. In this case it is better to listen than to look. People often ask for help and aren't heard. and others who never asked have help forced upon them (or are avoided out of fear) because of their appearance. 

Words for our times: Pass through fear and listen.