There was a girl who didn't fall down

There was a scrawny girl with legs and arms too long for the rest of her. And those were crooked, the bones curved wrongly. Her face was almost all toothy grin and huge thick glasses.

When I catch a glimpse of her in an old picture my mind reels. That was me. I know it was but I can hardly relate anymore.

I was beyond gawky and awkward at thirteen. I had terrible posture from being nearly blind and constantly leaning forward to see things. I looked disabled and I was almost entirely socially isolated. Self-esteem wasn’t even a concept. I was in survival mode. Nothing beyond that mattered much.

Creative Commons image by Sheila Kaye Matthews

Creative Commons image by Sheila Kaye Matthews

But then there was that one day when a summer camp counselor from the Blind School took me and a few other kids out to the Columbia River where the state Special Olympics water-skiing team was training. They figured, since they had the equipment out there, they would give us the chance to just try it out.

I can still remember how they made us stand on the grass and hold our hands out in front of us with a stick. We bent our knees while one of the adults gently tugged at the stick in our hands, trying utterly futilely to give blind children an inkling of what it would feel like to water ski.

We could hear the noise the boats made and distant shouting. A few of us could see the very beginning, when a skier sitting in the water rose up and seemed to stand on the surface for a second before disappearing beyond our extremely limited visual range. Our concept of water skiing was very shaky.

“The water will push at your feet.” The instructor put his hand on my feet and then on my knees. “You have to bend your knees and lean back against it.” He put a hand at the small of my back and coaxed me to lean back. All I knew was that if I leaned back that far, I’d fall over.

“You will fall down the first time and probably lots of times,” they told us. “It’s not about staying up. It’s about getting up and trying again.”

Adults who teach blind children love cliches.

I thought about all that water. I could sort-of snow ski, so I knew how skis worked. In theory, I guessed that the skis could push against the water if I was pulled forward by the boat, and somehow I’d ski up out of the water and stand on the surface. And then I’d lean back, like they said. It just wasn’t conceivable.

“Don’t worry,” the gentle lady from the Blind School consoled me, patting my shoulder as we walked toward the river, “If it is too hard or anything, you just let go. You’ll fall right into the water like jumping off the diving board. No big deal.”

I realized when she touched me that I was shivering all over. My whole body was buzzing with a fine unconscious vibration, like the hood of a souped-up car..

I waited behind several other kids. Each one in turn stood in the water near the shore while the instructors put on their water skis and then handed them the stick at the end of the tow line. One instructor near the shore would count down and the boat’s engine would rev and then the tow line leaped forward.

Half of the time, the blind kids just let go of the stick and never even fell down. The other half of the time, the tow rope pulled them a few feet forward and they splashed head-first into the river. I tried to make out the scene but all I could get was a general impression as the instructors pleaded with the three kids in front of me not to let go of the stick the instant it jerked forward. Two of them let go anyway and the third splashed into the river.

Finally, it was my turn. The water was cold and my shivering got so bad that I thought I couldn’t possibly hang on. The instructor put my skis on and held my knocking knees for a second. I comforted myself that even if I couldn’t keep a hold of the stick, at least the first pull would show me what it felt like. They said we could try again, if we wanted.

I leaned back as far as I could and felt the skis. I gripped the stick with all my strength. I was determined that at least I would be one of those to fall in the water, not just lose the stick.

“One. Two. Three.” The boat engine revved.

The stick jerked hard and I almost lost it. My body lurched forward and I was sure I’d be in the water face first, but then the skis moved. I crouched low, the way I did on snow skis on a steep slope and I felt the slope rise under the skis.

The rope pulled hard at my hands. My knees knocked and I almost went down as the skis broke the surface of the water and the line jerked even harder. I heard a faint yell go up from the people on the shore behind me.

And then a miracle happened. The water buzzed away under my skis. I slowly stood out of my painful crouch and leaned back into the feel of support from the tow line.

“You OK?” A hoarse yell came from the boat. The shore was long gone.

I gritted my teeth and nodded hard. I was glad for the ability I knew sighted people had to see my nod without my having to unclench my teeth to yell back. I was so cold from the wind that my knees and elbows were still shaking but I was OK.

I felt the way the water was like springy, unstable ground beneath me. I felt the secure tug of the line. The boat slowly eased on a little more speed and the water felt harder under my feet.

I experimented gently rocking from side to side. I tried to dig in one side of a ski the way you do in the snow and almost fell. I lurched forward and then to one side and the boat engine sputtered and nearly cut out when whoever was watching me saw what I had done. But I regained my balance and kept going.

That first time up actually seemed to take forever. Mostly other than the thrill, all I remember is how incredibly cold I was. Finally when I didn’t think my muscles could take another second and I was shaking so hard that it must have been visible from the boat, the motor slowed and stopped in the river. I sank into the water, which felt as warm as a bath after all that cold wind.

The boat circled around and came in close so that I could take off the skis and climb up onto the back of the boat.

I barely heard what the people on the boat said, except for one thing they kept saying, “Two miles.”

I thought it had felt long but that long? I was a rural kid and I regularly walked two miles to reach a friend’s house. That was a good distance.

They took me back to shore and I got to warm up while I waited for the other kids to try again. I was worried that they wouldn’t give me many other chances because after all, I had really had a good ski, while the other kids had just fallen in the water, but within a couple of hours, I got to try again and then again. A lot of the other kids wouldn’t do it after the first few tries.

A few did get up on the skis but clearly I was different. I had never been athletic before and the whole thing confused me. I wasn’t special. Not in anything but academics at least. I was a good student but hopeless in social or physical realms, a complete social outcast and a stereotypical nerd, other than being female and growing up rural with physical chores that made for a bit of unskilled muscle.

Once a couple of the instructors came over to me while I was getting the life jacket on again for another try. One of them seemed to be showing the other one my legs. I don’t remember the exact words but apparently they theorized that the crooked, curved bones in my legs that made me run in a grotesquely flailing and inefficient manner, might have by chance given me a water-skiing advantage.

I spent not just that day but the entire week on the water and I was allowed to water ski just about as much as I could stomach. I learned to cross wakes and ski through obstacle courses. I got to go as fast as I could handle and face fear. I couldn’t recognize anyone’s face because I couldn’t see and the noise of boats made it so I usually couldn’t hear what anyone said either. I was almost entirely cut off from the human world during that time, but I didn’t really care.

It was all physical—the water, the sunshine, the cold wind, the pull of the line, my aching muscles the slap of impact when I did fall, which I did a lot once I started crossing wakes…

It was more fun than I could ever remember having and the only bad part was contemplating the end of the week and my return home to chores, boring schoolwork and mean kids at school who ostracized me.

But then at the end of the week, several adults came to me and said I could join the Oregon state women’s team and go to the National Special Olympics water-skiing competition in Florida. There was even a picture of me in the local newspaper, goofy grin and huge glasses behind a water ski dramatically posed for the camera, but the clipping was lost somewhere in the past thirty years.

I went too. It wasn’t as much fun as that week on the Columbia. There was a lot of waiting around and when I finally got to compete, the place and the skis and everything was unfamiliar and I didn’t do very well.

But that didn’t really matter.

I told myself none of it really mattered. it was “only” the Special Olympics after all. I didn’t even tell my friends at home much beyond that I got to go water-skiing. No one made a big deal about it. I got third place in some category or other but I didn’t feel like I’d won.

That wasn’t the point. The point was that engagement with the physical, that sense of being one with my body, of being physically strong and worthy.

Today when I hear about the Special Olympics facing funding threats or I hear people use the Special Olympics as a slur or a joke, I can’t help but think on that. I did other Special Olympics things as a kid. I ran track and field in the local competitions. I didn’t really like it and I didn’t win with my flailing legs, but it was good exercise. I did know how to push myself. That was good too.

But I know those two weeks of water-skiing—one on the Columbia and one in Florida—changed my entire self-concept as a teenager. I went from just surviving and fighting everyone and everything because I was rejected and wrong and hurt to nursing a ferocious desire to “show them all.”

I’m not saying the second impulse was even healthy. I was driven for the next twelve years to succeed academically and professionally. I competed for and got a scholarship to study abroad when I was sixteen. I competed for and got scholarships to go to a prestigious private college. I competed for and got a coveted place as an international stringer for a national newspaper and became a journalist in the Balkans and Eastern Europe. I traveled through more than 30 countries.

Did it start with that miraculous moment when I didn’t fall down, despite all the predictions? Time-wise, yes. It coincided with the sea change.

Psychologically it is hard to say. But I’ll stand by the Special Olympics. I’ll do whatever I can to make sure it goes on, because I think it did play a role and does play a role with a lot of kids who are beaten down and at the bottom of despair. It’s one way to rise out of that.

Exclusion: The abled-privilege knapsack

Shutting down "the privilege Olympics"  should not be code for "screw the disabled"

You too are wearing an invisible knapsack. 

In 1988, Peggy McIntosh explained white privilege in terms of an invisible knapsack filled with unearned benefits and assets that white people carry with them almost entirely regardless of class, economic status, citizenship or other conditions.

It's a good analogy. I am now much more aware of my knapsack of white privilege and I can observe the effects of its contents on a daily basis. 

I have never seen a similar analogy used to describe abled privilege, but it is time someone did. In the last few years the necessity of acknowledging abled privilege has been shoved in my face ever more frequently. Even in social justice circles where such things are typically read, people with disabilities are continually being marginalized and silenced.

Creative Commons image by Woodleywonderworks

Creative Commons image by Woodleywonderworks

It is worth noting from the beginning that people carrying the white-privilege knapsack but not the abled-privilege knapsack or visa versa might well enjoy some of the benefits of the one they do hold, but there are assets in both of these knapsacks that are very difficult to enjoy if you don't have the corresponding assets in the other knapsack.

So, as a white woman brought up to be aware of white privilege, I can pick out instances of white privilege that I enjoy. These are not so much unearned privileges as they are privileges earned by every human but accorded only to those who are white--the privilege of driving or walking without a well-founded fear of being accosted by law enforcement for trivial or non-existant reasons or the privilege of relaxing into a social situation in which my race and culture is in the majority most of the time.

Having children who are not white has taught me even more about my own privilege and a few privileges I gave up by being part of a racially mixed family, such as losing the ability to shelter my children from the societal realities of racism and the very real dangers they face because of it. 

However, there are some assets in the white knapsack that I have pulled out broken or severely dented because of my disability. Unlike most white people, I am beset daily by the assumptions and prejudices of others, both unconscious and conscious. I rarely to through a day without being yelled at in public and someone pushes my "difference" in my face at every turn. 

I was once told explicitly that I was denied a job that I was qualified for because of my disability and I have wondered about the reasons behind many other rejections. I have faced social isolation, rejecting neighbors and hostile school teachers as well as accusations of stealing in stores.

I do not claim that it is the same as what people of color face. In fact, I know it is not the same. But people of color who are not disabled do also enjoy privileges that I cannot.

Please note that this inventory has very little to do with the actual health problems people with disabilities may have. It has everything to do with society’s reaction to and ultimate rejection of us. The benefits of privilege represent the minimum of respect earned by every human being from birth and this is true of abled privilege as well. It is our right to be treated with respect and dignity, to have opportunities and to be judged by our actions rather than by attributes we cannot choose.

So, here is an inventory of the abled-privilege knapsack with some prompts drawn from McIntosh's essay and the writings of Emestine Hayes.

Creative Commons image by Honza Soukup

Creative Commons image by Honza Soukup

If you are temporarily abled, you are wearing an invisible knapsack and in it you will find:

  • You can, if you wish, arrange to be in the company of people who view your physical body and neurological setup as normal and acceptable pretty much all the time.

  • You can turn on the television or open to the front page of the paper or open a random Google search and see people of your shape or appearance widely represented.

  • You can easily buy posters, postcards, picture books, greeting cards, dolls, toys, and children’s magazines featuring people that look vaguely like you.

  • Your body shape is reflected in media, movies, books, magazines, online and in most people's imagination as good and capable, even if sometimes not perfect. As a result, while you may have insecurities or anxieties about your looks, they are not a barrier to social interaction.

  • Beauty, handsomeness, masculinity and femininity are personified by people of your general appearance and body shape. 

  • You can be fairly sure of having your voice heard in a group, even if most of the group has different abilities, body shape and speech from yours.

  • Authority most often rests in people who look like, speak like and perceive the world like you.

  • You do not need to make an in-depth study of the social habits and customary communication methods of your immediate neighbors in order to avoid daily conflicts of misunderstanding and unintended offense. 

  • You can criticize the government and talk about how difficult it is to access basic services without being seen as a moocher, a whiner, ungrateful or a burden. 

  • You can go home from most meetings of organizations you belong to and social gatherings you attend feeling somewhat tied in, rather than isolated, out-of-place, rejected, unwanted, unheard, barred at a distance, or dismissed.

  • You can attire yourself, if you choose, in a way that most people in your community seeing you and hearing you speak will assume that you are capable, responsible and trustworthy until proven otherwise. If you happen to belong to a group where this is not always true, a community of people who do look and sound like you and where you would be respected and trusted does exist somewhere in the world. Even if you don't live there, the knowledge that such a community exists bolsters your courage and self-confidence and in most cases you could move to such a community if outside pressure became too intense.

  • People make eye-contact with you and you are able to make eye contact with them. People make small-talk with you and you are able to make small talk with them. This initial social contact often leads to social connections, builds bridges and defuses potential conflicts. 

  • While you may have been teased at school, your chances of suffering from extreme bullying or complete social isolation in childhood are dramatically reduced. Your chances of suffering from PTSD and other acquired barriers to communication with others are significantly reduced.

  • Teachers at schools and universities almost always look like, speak like and perceive the world like you do.

  • The vast majority of students and teachers all through the education system sense the world, communicate and access textual materials in the same way that you do.

  • The entire education system is custom made and designed with scientific precision to benefit your type of brain and calibrated to meet the needs of your particular senses.

  • The language and writing system of your culture was designed by and for people who communicate and perceive language in the same ways that you do.

  • Public buildings, including schools, were built using models of your body, to make them comfortable and easily accessible to you.

  • You have probably not been called a burden. You were not called a burden to your school while you pursued your education.

  • If you are denied employment for which you are qualified, you can be pretty sure it isn't because of an attribute you did not choose and which does not affect your job performance.

  • If you are given an award, you can be pretty sure it is something you deserved rather than a publicity stunt by the patron of the award. 

  • You can take a job with an affirmative action employer without having co-workers on the job suspect that you got it because of disability hiring incentives.

  • If your day, week, or year is going badly, you need not ask of each negative episode or situation whether it is disability related.

  • You can choose public accommodations without fearing that you cannot enter or will be treated with disrespect in the places you have chosen.

  • When you plan social engagements, your way of getting to and into the venue is the same as that of most of your friends and you don't need to strategize, beg for assistance from friends or go to extreme expense to get to or enter the social venues your peers take for granted. 

  • You can always ensure that your living, schooling, work and or social environment will be among people you can communicate with and among which you will be considered "normal" if you desire.

  • You can always find a living, schooling, work or social venue that you can physically access and fully participate in locally if you desire. 

  • If you should need to move, you can be pretty sure of renting or purchasing housing which you can afford and which you can personally enter and use fully and from which you can get to schools and places of employment.

  • You can be pretty sure that your neighbors in such a location will view you as a full adult, if you are over 18 years old. .

  • You can go shopping alone most of the time, pretty well assured that you will be able to access merchandise and that a reasonable portion of it will fit you and be usable by you.

  • Whether you use checks, credit cards or cash, you can count on not being infantilized, shamed or dismissed by cashiers and other people you interact with in public..

  • You can arrange to protect yourself from harm most of the time.

  • You are twenty percent more likely to finish high school than a person with a disability who has similar intelligence. You are twice as likely to finish college.

  • You are at least three times as likely to have any sort of job than a person with a disability and much more likely to have a job that is of some interest to you, that provides some social prestige, that pays your bills and in which you can progress for a career.

  • You are half as likely to be hungry as a disabled person. 

  • You are a third as likely to be a victim of sexual assault and half as likely to be a victim of violent crime as a person with a disability from a similar social or economic group and geographical area. You are half as likely to be a victim of domestic violence.

  • You are twice as likely to have family and friends nearby or who you can contact in an emergency. You are likely to have a circle of friends to enjoy leisure time with and to network with for mutual benefit.

  • You are twice as likely to have a long-term relationship. You are many times more likely to have children.

  • You can swear or dress in second-hand clothes or not answer letters without having people automatically assume these choices indicate low intelligence, shaky mental state or poverty.

  • You can be temporarily out of work or sick without being called a burden or assumed to be unemployable.

  • You can do well in a challenging situation without being called "an inspiration" or used to further the religious or social agendas of others without your consent.

  • With education and credentials, you could become an an acknowledged expert on people who look, speak and perceive the world differently from you and you would not be asked why you did not choose to study your own group.

I am sure I have missed some. It's a large knapsack after all. 

This is one of those posts that will inevitably draw flack. It isn't that I don't care. I have simply decided that the amount of verbal shrapnel I'm getting in "progressive" circles these days for being an uppity person with a disability has reached a point where the potential flack from this post won't be a significant change. 

So let me lay it out there. I am sick of the dismissal of people with disabilities in activist circles. I am sick of being told, "you are white so you need to practice being silent for a while," when I have been silenced, dismissed and sidelined my entire life.

I am sick to exhaustion of being excluded, rejected and sidelined in supposedly progressive groups because I didn't take an insult or bullying in silence and answered back withotu profanity, without insults but nonetheless with unpalatable truth. . 

I get what people of color, indigenous people, speakers of languages other than English and people living in absolute poverty are talking about when it comes to wanting those with privilege to stop yammering about their perspective on society, their perspective on history, their perspective on underrepresented people and their perspective on social justice long enough to listen to the perspectives of those less heard.

I get it because while I have the privileges in the white-privilege knapsack, the English-speaker's knapsack and the resources-beyond-bare-survival knapsack, these are usually not enough to be heard without abled privilege. 

This is not "the Privilege Olympics." It is not a matter of whose usurped privilege is worse. It is almost always so different that it cannot be compared. Still mentioning "the Privilege Olympics" or equivalent is routinely used to dismiss and marginalize people with disabilities in activist circles.

We have huge, life-threatening threats to people of color. The crises for people of color are so extreme in some places that there can be no other priorities or even distractions.

Many of us, myself included, have agreed to this, stepped back and ceded precedence because while there are life-threatening and devastating issues for people with disabilities as well, the numbers seem to indicate that our problems are at least statistically less severe. We activists with disabilities have often felt that we can wait a little while and trust that our progressive activist communities would do their best to include us in the meantime. 

But that trust has been misplaced. 

Not once but again and again. Not only do people with disabilities encounter a lot of social exclusion, bullying and discrimination in society at large, we encounter much the same atmosphere inside social justice organizations and groups claiming to be against bigotry and hate. 

My experiences and the experiences of those I have spoken with are clear. People with disabilities are welcome in these groups primarily as mascots or symbols. We are not respected for in our fields of expertise and study. We are often silenced and rarely given a voice. 

I've been told that my voice and experience are not welcome in progressive and social justice groups on multiple occasions. Usually this was not specifically because of my disability but rather because of my race. I was told that as a white person I am privileged and my role is not to speak. As a blind person, however, given that no other people with disabilities were present or given a voice, I felt that our voice was needed. 

I have been rejected quickly from several groups when my politely phrased protestations against being silenced were regarded as going against group authority. I never used profanity or insults against others in my responses. I did not talk over others but only refused to be entirely silent.

For that reason, this inventory of the abled-privilege backpack is necessary. I welcome any additions that others may find while rummaging through it. 

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

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

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. 

Author portrait.jpg

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. 

To cane or not to cane.jpg

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 

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 hum 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.

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 adotions (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 you 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

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 

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

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

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.