Open letter to Trever Noah about the word "spaz."

Dear Trevor Noah,

I’m sure I’m probably not alone in telling you that your show is a balm for me, a respite from a despairing world and a healing draught of laughter in the face of things that hurt too much.

I’ve got two kids who I adopted from traumatizing orphanages in the Czech Republic. They were kids the authorities told me “no one would adopt” because they are from a despised, non-white ethnic group—the Roma.

We spent the first ten years of their lives living there in the Czech Republic. 2008, the year before my daughter was born, was the first year when Romani children were allowed to go to standard Czech schools. By the time she went to first grade, I didn’t need a lawyer or a police escort to get her into school, but it was nip and tuck there for a while.

My son’s preschool attempted to expel him when he developed a minor allergic skin rash, because he was non-white and their assumption was that he was diseased and contagious. They would have succeeded too, if his pediatrician hadn’t been progressive and feisty. That was in 2015.

I tell you this, because you need to know that I’ve seen a few things. I’m a white American, but I’m not exactly your typical white American. I’ve had “the talk” with my kids, ages eleven and thirteen, about police and brown people. I learned how to do it by reading Black authors, listening to you and talking to my Nigerian friend in Prague, who was distressed when I said we were moving back to the US to escape the rampant racism and the beatings my son was enduring at school.

“You’re going THERE to escape racism?”

I grew up in the US—in a particularly backward and monotone part of it, in fact. I have few illusions about things here. I told her that she was absolutely right. That we probably wouldn’t be going, if my children were Black. But they aren’t Black. They’re Romani, and the realities on the ground are such, that it’s safer here for them than there. She agreed that that was the best a parent could do.

Image of a dark-haired man drawing a picture of a female figurine with his toes.

Before I had kids, I lived and travelled in more than 35 countries, including several months in Zimbabwe near your homeland. I spent ten years working as a journalist, primarily exposing the quiet but lethal racism against Roma in Central and Eastern Europe. That’s my history, which I think may give you some perspective on what I need to say to you.

I am also pretty anti-celebrity. I’ve never really cared about a celebrity who was alive before, since the last one I liked at all was Bob Marley and I was five when he died. I know famous people have the same feelings and foibles the rest of us do. And so, it isn’t so much that you fell as a giant for me when you dismissed the concerns of people with disabilities. It is that I felt like I was betrayed by a friend.

That’s silly, I know. You don’t know me, but I don’t watch any TV, except for you. I listen to audio books or listen to international news. I watch Netflix on a tablet occasionally. But TV? Nope, except you when I exercise every morning, there’s nothing on there I care to see. And as I said, your ability to laugh in the face of the worst depredations of our world is really and truly medicine.

And I know that it is always only a matter of time before anyone, even the best friend, has a different opinion. That’s not the point. I have disagreed with you several times. No sweat. I don’t even entirely remember what the fine points were. This is different, because it strikes at the core of who you are. It is something that betrays all the work of bridging divides and empowering the disempowered and fostering empathy that you’ve done.

Yup, it’s about Lizzo. Now, I don’t know LIzzo very well. My daughter listens to her. I think I recall her listening to a song with the word “spaz” in it at one point. I noticed and mentioned it to her, explained that it’s a derogatory word that we don’t use in our house, because it is used as an insult against people with disabilities. We had the whole discussion about how it means something quite different in this music. I didn’t know for sure but guessed, even at that point, that its meaning might be significantly different in African American culture than it is for most of the country.

I wasn’t that mad. I didn’t forbid my daughter to listen to that music. It’s far from the only “bad word” I don’t want my kids repeating at school that they encounter in popular music. And no, just talking to my daughter about it, didn’t fix it. My daughter is developmentally disabled, essentially due to the horrific conditions Romani children endure in the Czech Republic. She has talents but she was injured by that system and part of that injury is neurological damage that interferes with her ability to understand abstract concepts, remember conversations or connect cause and effect.

So, I talk about these things with her, but she may well repeat the word “spaz” anyway. She’ll certainly hear it used as an insult against disabled children at school, maybe even against herself, though she works very hard to blend in and pass for average.

And that’s the thing, Trevor. I’m not mad at Lizzo. What she did was something that happens. Yes, I understand the argument that she was a bit dismissive about apologizing and changing the song with “spaz” in the lyrics, but as you said, she changed it. That is such a big step in the right direction, it’s worth recognizing.

People with disabilities have largely been left out of the “woke” wave to shield under-privileged groups from microaggressions. So many people would have completely ignored criticism over “spaz” or any other word insulting people with disabilities. You sound like you would have. Lizzo didn’t ignore us, and I’m not too picky beyond that.

If I was someone close enough to her to have a conversation, I might have said, “Please, stop on that a moment. Take a moment to empathize. It isn’t just about avoiding being publicly criticized. It really does hurt people, just like some words would hurt you.” But that’’s it. The basic thing was, she did what was needed. She apologized and changed the song.

Here are two other bits about my background, Trevor. I am a linguist by education, so when I say I’m looking at this not just from experience but also from a language development standpoint, there’s that. I am also blind—that is legally blind. I see about 5 percent of what you do. It’s not noting but it’s pretty minimal. I’ve been that way since I was born. Yup, I’m the same person who worked as an international journalist and hung out in Mugabe’s Zimbabwe as a lone white girl. I was also blind while I did that.

Here are some facts, you need to know about the word “spaz.”

1. I was called “spaz” as an insult every day for over a decade as a child, in the United States. It isn’t only a derogatory term in the UK and Australia, as you insisted repeatedly on television. It was and still is used as a vulgar insult in this country. You claimed it isn’t and was never used that way in the US. That was factually wrong and I hope you’ll retract it publicly.

2. I have noticed the linguistic migration of the word “spaz'“ over the past couple of decades. As I’m sure you’ve read, it started as “spastic,” relating to a type of muscle convulsion or cramp suffered by people with some disabilities, but it has been used to insult all people with disabilities, including blind people.

3. When Donald Trump made that motion with his arm at the reporter who was disabled, that was the motion that usually accompanies the word “spaz.” That gesture also refers to a “spastic” muscle contraction. People with spastic disabilities sometimes move their arms that way involuntarily. Donald Trump is obviously in the United States—not the UK or Australia. And that was not very long ago. Donald, as you’ve pointed out, doesn’t have a great memory and wouldn’t have remembered if this word was only used as an insult decades earlier or in another country. The fact that he used it is pretty good proof that it is a conventional American insult.

4. About fifteen years ago, I first heard people start to refer to “spaz” as just meaning “crazy” and overly emotional. It had migrated from just disabilities, to mental illness, and like the word “crazy” to behavior that is considered a bit too much. It then migrated further in some communities to mean something less negative as acceptance of “wild” behavior became more widespread.

5. But it is still used as an insult, NOT just in other countries. Here and now. And despite having a migrated and coopted meaning, I am sure you are aware that many other insulting epithets have undergone similar linguistic migration and we don’t excuse them. It is hard to imagine that with your American staff you weren't;t told the truth. There’s a word for knowingly obfuscating the truth and insisting that our lived experience is not real—gaslighting.

6. As an example, please try asking Siri (or Google) the definition of the word “Jip.” I believe you’re well-educated enough to know the connotations of that word and would never use it. But Siri says the origins of that word are “unknown.” While even Siri—and certainly a dictionary—would have told Lizzo the connotations of “spaz” had she checked, an uneducated person could not be blamed too much for using the word “Jip,” since looking it up isn’t very helpful. Yet that word is abhorrent and rightly shunned in woke circles. It is a racial epithet aimed directly at my children. But it’s used here in rural Oregon. I used it as a kid, until I learned better. Gip = Gyp = Gypsy = stereotypes about Roma being thieves. Words migrate linguistically, but that does not mean we give them a pass when they are still currently used as insults and derogatory epithets.

Here are some things, I am betting are true about you, Trevor:

1. I cannot imagine that under any other circumstances, you would deem it acceptable to use a word that is still used as an insult against a vulnerable group, if that group was a race, ethnic group, culture or LGBT+ group.

2. I feel very sure you have been told by people with disabilities whether in online comments or hopefully in person, that “spaz” is still used as an insult, including in the US. I wonder if you were told that before you went on the air dismissing us as people with valid concerns or only after.

3. I feel pretty confident that I’ve heard you say that it should be up to the given vulnerable group to say when a derogatory term used against them is “fair game” again. But you aren’t giving people with disabilities that agency.

4. You decided to state on your show and at great length with repetition, that Lizzo never did anything wrong. You criticized and condemned those members of the disability community who asked for an apology and a change to Lizzo’s song. That using the word “spaz” was legitimate in her circumstances because you believe “spaz” is only derogatory in the UK and Australia.

5. You have a diverse crew. I guarantee some of your staff know very well that that your statement is blatantly untrue. Either they told you that and you ignored them, or they are so afraid of crossing you, that you have got much worse problems than marginalizing people with disabilities.

Trevor, here’s the thing. Lizzo goofed. But it was understandable. We don’t check every word we use for its connotations in the next neighborhood over. It’s possible that in her subculture, “spaz” really hasn’t been used as an insult in her generation. She was told, and she fixed it.

Some people apparently weren’t happy with her quick and unreflective turnaround, feeling that she was only doing it to avoid criticism. That’s what I saw you get upset about. I’ve noticed that you often seem to feel protective toward the African American community. Nobody’s perfect and every time the Black community in the US makes a mistake, they get just as little leeway as a Black teenage male committing the usual sins that white teenagers regularly get away with. I get it.

But you went a step further and a step too far. You insisted at length that the facts are not the facts. You gaslighted us, telling us that what we know is reality isn’t reality. And you did it because the group you were dismissing is the one group you have never included in your work of bridging divides. I wonder if it is only that you have little experience with people with disabilities.

I have always loved your work because of all the good things in it. I have vaguely noticed that you never include anything about people with disabilities, but I didn’t realize, until now that this is a real blind spot for you. (No, that’s not a problematic term for me. It isn’t used as an derogatory term against blind people.)

Frankly, it isn’t just you. The woke movement is often dismissive of one particular group they should naturally be allied with, and that is people with disabilities. Sometimes we’re included as an afterthought but often we’re left out entirely, as we’ve been left out of your work in bridging divides and making healing out of humor.

Maybe for you that’s partly because people shy away from making fun of anything to do with disabilities. I guarantee I could introduce you to some people who can get you rolling on the ground laughing about disability issues. We are sometimes a bit too much, but I’m sure some of our self-styled “gimp humor” could be made accessible to the rest of the world.

Trevor, you said people often get mad at a celebrity who does something that hurts them and that’s it. They’re done. That’s cancel culture. That’s not my way. I mean, maybe if I heard someone I respected and admired had bragged about grabbing women by the pussy. I guess, I’d probably actually boycott them immediately. But this isn’t like that.

I notoriously can’t hold a grudge. But I haven’t been able to watch your show for the past month. I thought I’d just get over it, but it hurts. When I see you going on without any concern for the hurt this caused and when I saw that it is virtually impossible to send you a letter you will actually get, I can’t listen to your voice without hearing that jeering, derogatory insult against me and my kids.

But I don’t want to give up on you. You’re one of the best we have and I think you can see past this prejudice and accept people with disabilities as part of the communities. you fight for. I’m hoping that enough people will tell you that your dismissal and gaslighting of us hurt and that you’ll listen. Because while I know you’re human, so you can have prejudices and blind spots like the rest of us, I think you—like me—have seen a lot in your life. And that kind of experience gives us the ability to stretch and grow past those prejudices.

So, I still hope that some day I’ll see you retract the untruths about the word “spaz” and affirm that people with disabilities are valid, that insults against us are not okay, that musicians can and should be aware of that in their language, and that Lizzo did the right thing after being justifiably criticized.

But because I do believe in your talent for healing divides, I also hope against hope that you’ll be one of the first to break through the lockout of people with disabilities from the woke movement. I think you’ve got it in you, and when you can laugh at the social systems that cause the vast majority of difficulty that people with disabilities face (the actual physical or neurological problems are minor by comparison), you’ll discover a whole new area of healing humor.

Your voice is strong right now, very strong across this country and especially in progressive communities. I believe that if you are introspective and real and honest enough to look back at that thing with LIzzo and admit you were wrong and that your words hurt people, it would matter a great deal. It could be the moment that turns the tide and makes the woke movement fully inclusive.

A world designed for people like me

I have defended the terms “disability” and “disabled” in the past because I like both linguistics and logic. But today I’d like to do a thought experiment that may put those terms in peril.

There are those who don’t like the word “disability” because it implies that only one type of body is right and good and perfect. It places emphasis on some particular capacity that someone may lack when compared with a supposedly perfect standard, while ignoring non-standard capacities they may have that the standard human doesn’t possess. .

The Deaf community has made a good case for getting rid of the disability label. Many Deaf people live without any sense of disability because they live primarily within a community that uses sign language and written communication. Both entertainment and safety are also well developed in this community. And it is only when they enter the hearing community that Deaf people become more likely to suffer injury due to mishaps or to fall victim to police violence.

An image of a middle-aged blonde woman with sunglasses and an expression of peace - Creative Commons image by Marneejill of Flickr.com

If a person is perfectly safe and able in one society but not in another, is the fault or lack of ability with the individual? Or is it rather a problem within the society?

Many of us assume it is the individual who should adapt. At the very least, it is easier for an individual to adapt than it is to change a whole society, and when we travel to different countries we accept that it is a good idea to adapt somewhat to the culture, and even more so, to the laws of that country.

But most people with disabilities don’t have the strong community and institutions that Deaf people have built up through years of struggle, and we likely never will. Disabilities come in many shapes and sizes and it is impossible for each group to build their own society. We will always be strangers and foreigners in a world that isn’t built by or for us. Beyond that, in many ways we cannot adapt to society for various physical and neurological reasons. That is why efforts have been made to adapt society just enough to give us a narrow opportunity to live.

Abled people often express a bit of resentment over these adaptations, as if parking spaces that allow people with mobility impairments to get to the store at all are somehow a huge advantage. I recently stumbled across a news story from my home state of Oregon, where I am moving in a couple of months that sent raw fear into me.

In the town of Brookings, Oregon, a woman named Jennifer Gaymen, who is visually impaired, like me, and also mildly mobility impaired, also like me, was arrested, jailed and charged with a felony for simply surviving in the only way she or I can. Like me, she can’t drive or move in the roadway, due to vision impairment. And she also can’t walk long distances due to an orthopedic illness. So, she rides a mobility scooter slowly on the sidewalk much like a wheelchair user. I do the same thing.

But a few years back, abled people in Oregon felt resentful of these mobility scooters, much like the disabled parking spaces. There were some abled people who abused electric scooters on sidewalks, behaving dangerously and scaring or injuring pedestrians. So, a law was passed banning all use of electric scooters on sidewalks. Because of the resentment toward people with disabilities this law was expanded to include mobility scooters and even to bar the use of mobility scooters on roads by anyone who doesn’t have a full automobile driver’s license, which essentially excludes the very people mobility scooters are intended for.

This is despite the fact that a search failed to unearth any case reports alleging that any person with a disability using a mobility scooter has abused pedestrian rules or endangered others on sidewalks in Oregon or anywhere else.

This law renders Jennifer Gayman and me—people who are normally quite active and capable—severely disabled and essentially homebound. Gayman was cited for riding her mobility scooter and then jailed and convicted of a felony for refusing to abandon her expensive mobility device in the middle of the night in the winter and walk two miles home, which she physically could not do.

She has sued the city under the American with Disabilities Act, a federal law which clearly states that people with disabilities can use whichever mobility device best fits their needs and that local laws must adapt. But she has been homebound and restricted from getting around for two years while the case languishes in the court system.

Once I might have been significantly disabled before this kind of technology existed, but today with the help of technology the “dis” or “un” abling part of mobility is significantly mitigated. If a law then imposes artificial disability on me, how should I be labeled? Does it make logical sense to say this is my “disability?” It isn’t my “dis” (wrong or lack of) ability that causes me to be homebound in that case. It is more correct to say that I am a “restricted” or “banned” person, because it is external restriction that imposes the primary limitation.

Maybe we should start using these terms when referring to individuals who live in a society where rules, laws and social norms restrict or ban them when reasonable and healthy adaptation is possible that would make them fully capable.

This all got me thinking about what a society would have to look like to make me completely abled without restricting others. Even allowing reasonable access for mobility scooters only makes me theoretically able to move a little bit—slowly and very locally.

Here’s the thought experiment then. What would it take to really make it so a person like me who is legally blind with some mobility impairment would be able to view my differences like many Deaf people do, simply as a difference rather than a disability?

To be clear, I can’t cover every type of different body or neurological type because I don’t have all those experiences. This is just an exercise in figuring out what would make the difference for me.

An image of older adults riding bicycles in professional clothing next to a modern street car in Copenhagen, Denmark - Creative Commons image by Dylan Passmore

Getting around

The first issue has to be mobility because even though some of the other issues are arguably more important, history has taught us that if people with disabilities can’t get to the table, nothing ever changes. Secondly, the mobility issue is the one that would require the most difficult adaptation from society.

What I need is to be able to get around both locally and beyond about as fast as other people. That is simply what I would need in order to “not be disabled anymore,” to be able to work competitively, take care of all of my responsibilities and take advantage of all the opportunities everyone else takes for granted. I currently really appreciate ANY mobility options, even when they are much slower and more difficult than those most people enjoy. But this is what it would take to make me “abled.”

What could a society look like that would give me that?

Well, public transportation would have to be the mainstream. If there was personal automobile transport that you have to see in order to drive, it would have to be a secondary thing. Roads would not be what goes everywhere. Rail lines would. Roads would be the secondary sort of thing, like a hobby or something special.

Parking lots would be small and easily navigable on foot because most people would use trams, trolleys and trains for major transportation. Our cities would no longer be 60 percent asphalt, maybe 20 or 30 percent at most.

Because they would be used by vast numbers of people, these rail transport systems would be well funded by taxes and affordable for people to use, though it would be an expense, like gas is to many people today. You would hardly have to wait for the next tram or train in most places because that would be “the main road.” Because of the relative high speed of rail transport, the fact that these vehicles have to stop to pick people up at various stops would even out and transportation would be about as fast as road transport is today, except over long distances it might well be much faster. And I’m not even counting traffic jambs in this accounting.

All these public transport options would accommodate not just wheelchairs but every kind of mobility device and likely also bicycles for everyone who wants them. The first would ensure accessibility for all and the second would just be common sense.

Under these conditions, people with disabilities would move just as fast as abled people, and thus in a lot of ways, they would become abled and would be full competitors for jobs and full contributors to all of society.

Routes for bikes, scooters and walking would be everywhere and well adapted to the landscape and the rail transport system. There would always be a ramp. There might be some lanes for fast movers where pedestrians, children and people with vision or neurological impairment might not fit in, but there would always be a slower alternative and safety rules for when these intersect.

People with vision impairment could have color-coded elements on their scooters or bikes to warn faster riders about their difference in reaction times and perception, but they would also have to demonstrate that they were not dangerous to pedestrians and those slower than themselves.

Yes, these changes would mean that society would have to adapt to make people with mobility, vision and other impairments equal and abled. However, these adaptations would also help to solve climate change and be environmentally friendly for everyone. The reductions in air pollution and the greening of vast swaths of asphalt in cities would improve everyone’s quality of life and would likely mean more pleasant community space for everyone. It would require adaptation by society but the benefits would also go to everyone.

Social norms

The other most significant adaptation would have to be in social norms. First, we would have to start talking about diversity in terms of different shapes and types of bodies and brains as much as we talk about it when it comes to race and sexual or gender identity. It would help that, with the mobility adaptations detailed above, the fear of disability as debilitating and physically limiting would begin to abate among all people.

But some prejudices and stereotypes hang on long after legal and infrastructure restrictions have been lifted from a group of people, as we saw when the civil rights movement lifted many of the legal restrictions on people of color. It would take some time for social norms to develop so that people would not respond so negatively to a person with a facial or speech difference, but just as reactions to people with various skin tones have changed, this too can change and would go a long way toward making disability no more than a difference.

Just as there is a push to change social norms today to use the pronouns preferred by individuals with non-traditional gender identities, some social norms would need to change with regard to disabilities as well. People would need to become more flexible and educated in how they interact. Because 15 to 20 percent of people have a disability that affects communication and social interaction, flexible ways of interacting would become part of our educational system for everyone, just as spelling rules and how to use money are part of the curriculum today.

Everyone would know to speak directly and clearly to a Deaf person. Everyone would know to let a Blind friend know when they approach and who they are. Everyone would know not to move a Blind person’s things. Everyone would know how to interpret and engage with people with neuro-diversity because it would be a normal part of daily life and would be as much a part of manners as “please” and “thank you.”

Bullying people about a physical, neurological or other kinds of differences would become as anathema as any other kind of harassment. It likely wouldn’t disappear as harassment that we clearly see as serious and relevant today has not disappeared, but it would be treated with the same seriousness that assaulting a privileged person is in today’s world, and its occurrence would be massively reduced.

As a result, attitudes toward friendship, romantic relationships and professional relationships with people with any sort of difference would markedly improve likely without the need for much more in terms of explicit rules or “political correctness.”

Public services and commerce

Naturally, buildings and public spaces would be built to accommodate the various shapes and sizes and legs and wheels of modern humans. Ramps and elevators would be maintained and mainstream.

Public signs would be bold and large print—larger than surrounding advertisements. Advertisements would be given a specific space, and not allowed to dominate attention or prey on neuro-diverse people or disorient visually impaired people.

Many signs, buildings, transportation vehicles and other public objects would have a small short-range transceiver which could be picked up by bluetooth and cell devices, so that blind or text-impaired people could listen to an audio transcription or description through earbuds.

Thus a street car would announce over a common frequency its number, direction, stops and conditions. A hospital or mall map or sign board would give verbal directions directly into the earpieces of those who pointed and clicked at it. Public restrooms, information booths, checkout counters and other important points would provide a directional beacon and broadcast over several hundred meters.

An image of grinning military veterans with prosthetic limbs fist bumping while using mobility devices freely in the middle of a major road - Creative Commons image by Herald Post

There would not only be Braille and large high-contrast print on elevator buttons but also on the aisles in grocery stores and on other things everyone needs to use. All labels on goods in stores would be required to have a QR code (turned outward on the shelf) which could be quickly scanned for audio description. Sections of a store would also be clearly marked with large print and short-range audio beacons.

The brightest and most visible signs would not be advertisements but rather necessary information. Shopping would become a regular, pain-free activity even for visually impaired people.

Instructions posted on walls in public offices would show up as audio notifications and blind people would no longer have to rely on the kindness of strangers to inform them of rules or procedures when visiting the local city hall or health center. A lot of this would require technology but it is all technology which is already easily available and in wide use today for other things.

Technology, entertainment and work environments

Technology would be a great help in opening up productive engagement to people who were previously “disabled” by our society in so many other ways as well. In my case, facial recognition software could be used with a small camera worn on clothing or glasses that would recognize the faces at least of the people I had already met and would identify them to me with audio notifications. This would break down vast barriers in professional networking and community interactions.

Similar technology could be used to help visually impaired people navigate. Already mapping technology is able to tell us how to navigate within a few meters accuracy. A little investment could render blind people significantly abled by giving on-demand information about nearby addresses, hazards and points of interest.

Technology could easily be developed that would provide detailed description and warnings on familiar routes that the individual could input manually, including things as detailed as when a step is needed and which direction to turn and how much. With the technology we have today cell phones could easily tell a blind person where to find a known person or a nearby business or landmark with detailed on-foot instructions. While most of these technologies stop their assistance once the person is close enough to theoretically look up and see what they are seeking, the assistance could be extended for blind people.

One piece of technology which I have not yet seen but which could be developed with our current technology and which would greatly increase safety for blind and visually impaired people would be a program for a camera mounted on glasses or a headband that would identify obstacles through an earphone.

While a properly made white cane is actually a pretty nifty piece of mechanical technology, it only identifies obstacles on the ground and many injuries happen because of signs, awnings, tree branches and the like at higher levels, especially at face level. Even service dogs (may they be always appreciated) don’t always catch everything.

We have devices that beep when there is an obstacle behind a car backing up, and we could have a much more sophisticated detector mounted on glasses that would help a blind person navigate safely. The same technology with a bit more development could even be adapted to help with tracking moving objects, animals and people, and might eventually provide an aid to self defense and sports.

Some technology changes would require human intervention, at least in the beginning. We would still need humans to put closed caption text and audio description into movies and TV shows or onto media images, but these would be regular jobs within these industries because people with visual and auditory differences would be normal members of society with the economic clout to matter and even if they weren’t a “big enough” demographic to be “profitable,” it would be part of the social norm, to include these things.

Would there still be jobs that I couldn’t do because of my vision and mobility differences? Sure, there would. I still couldn’t be an airplane pilot or a pro-basketball player in the sighted league. But neither could most people. It takes a very specific set of abilities and skills to excel at those jobs and you don’t have to be what is considered “disabled” today to be out of the running. I also couldn’t be a banker, because I am constitutionally incapable of focusing on money that much. We would all continue to have different talents and ability levels in specific areas.

In a fully adapted world, not everyone would be suited to every job. But everyone would have some useful and appreciated talent. Technology would help in in many cases but it would no longer be surprising that a blind person or a person with a wheelchair is a successful professional.

A few more details just for me

Everybody has their own specific needs and with the development of technology I hope that some things will become more affordable that would help me to do things as fast as everyone else.

For example, I would love to have talking measuring cups or even an electronic mixing bowl that would measure or weigh ingredients audibly as I put them into the bowl. Another thing that would allow me to cook my family’s meals better and faster would be small electronic chips on my jars and containers of ingredients that would make a small sound when called for. The calling could be done from a cell phone through a voice activation system like Siri or Alexa.

I enjoy gardening and one of my pet peeves about my vision is that it is very hard to weed when I cannot see the difference between my small plants and the weeds. A technological solution in the future might be a program on a camera mounted on glasses that could be taught through a push of a button to recognize young plants at a certain stage of development. I could then find one of the plants I want to preserve, point the camera at it, push a button and dictate to the program what plant this is (since plant identification programs aren’t yet very accurate with very young plants). I could do the same with common weeds.

Then as I weeded the program could give me a running commentary of which plant the camera was pointed at. It might not be 100 percent accurate, but given the very specific identification in the immediate environment, it would likely be quite good. Beyond that, maybe someday scientists will develop gardening gloves with sensors on the finger tips that can differentiate between various plant DNA. I’m getting a bit sci-fi here but the fundamental technologies exist.

Like many people with mobility disabilities, I watch the development of ever more flexible mobility devices and ever lighter and stronger batteries with great interest. I recently saw a two-wheeled wheelchair like vehicle based on a Segway which can handle light off-road terrain. It’s currently prohibitively expensive, but the technology is there to allow me to get back into nature on the hiking trails I used to enjoy even through the pain of mobility impairment. I hope more and more devices will be made for people who are physically active, strong and well-balanced, but who have joint or bone difficulties that make off-road movement difficult.

I would love it if there was a program using a camera mounted on glasses that would help a blind person aim at a basket in basketball or strike at a baseball with a bat. It could be done but it would require the athlete to develop a lot of skill in responding instantly to the signals. But then, every athlete needs a lot of practice.

When I was a parent of young children, I tried to find some sort of bracelet that my toddlers couldn’t take off that would help me keep track of them with even greater accuracy. I got very good at telling exactly where my toddlers were and what they were doing by hearing. But a locator that could be called or which would make a noise if the child exited a prescribed area would have made our family life less rigidly controlled.

As it was, I had to have gates everywhere and be extra vigilant. It was doable but required a huge effort that could have been put into more fun and relaxation in those magical years with young children.

Those are all the things I can think of just now. I realize that I didn’t include anything in there about making visually beautiful things accessible to people with vision impairments. I would love it if museums always made tactile replicas of interesting and fragile exhibits so that people with vision impairments (as well as the world’s much more numerous tactile learners, such as nearly all children) could touch them.

But when it comes to seeing a sunset or a mountain vista, I actually really enjoy these already. I’m not totally blind, of course, and there is a need for writers to continue to have jobs creating endless and wonderful descriptions for those who are. but I believe beauty is something we all experience in our own ways. We can try to share it with people who perceive the world differently, but the truth is that all of us are “differently abled” in that regard.

Final thoughts

When I envision a world that is fully adapted so that I would no longer be “disabled” or “restricted,” it turns out that this imaginary world would be better for everyone else too. OK, some people might have to get their driving fix through video games or on special sports ranges, but with climate change, they’re going to have to do that anyway. And really is one hobby actually more important than the 20 percent of the population who cannot drive for one reason or another?

But we don’t live in that world. We live in a world where, in the state of Oregon, Jennifer Gayman (and every other person with some mobility difficulty who also cannot drive) is made to be severely disabled. This whole experience—seeing that news story and doing this thought experiment—has changed the way I feel about the word “disabled,” which I used to think was a reasonable factual descriptor.

In a lot of situations, we may have to start referring to some of us as “restricted” or “banned” people, because it isn’t the abilities of our bodies doing this to us, but rather the artificial constructs of society. When the benefits of available technology are denied to us, either by law or by economic marginalization, we are “restricted,” not “disabled.”

While I was writing this post, my father went and talked to the local police department where I will be living in Oregon and obtained an exception for me to be able to use a mobility scooter in that small town. I’ll have to mark it with large disability signs, which I really don’t mind personally. It’s the fact that my reprieve is limited to one town and even one generation of local officers that is worrying.

I will likely never live to see the adapted society I describe fully realized, but I do hope that I might just see a day when these kinds of restrictions imposed by society on me and many others are viewed the same way we now view racism or transphobia—at least by allies. We’ve been asked to wait our turn for inclusion for a long time. I hope our time will come.

Who's racist or ableist: the Implicit Association Test

When you aren’t on a deadline or scrambling to get done the essentials (but your brain is too tired to either pursue your serious interests or get you moving toward something truly restful), there is something you do at your computer in that state of numb fog.

It might be browsing through pictures of cute animals on Facebook or playing Tetris or Solitaire. It might not always be the same time waster, but chances are you have certain habits. I wonder if those habits say something interesting about your personality.

My numb-fog habit is browsing through sociological and psychological statistics. If one’s numb-fog habit does say something about one’s personality, I am pretty sure mine says I’m a hopelessly weird variety of nerd. But there you have it.

Creative Commons image by Whisperer in the Shaddows photostream

Sociology and psychology statistics are like mental candy. I know that they don’t always mean what they appear to mean and they aren’t always good for me. But they strip things down to outlines and make the world appear much more orderly and predictable than it actually is, even if its predictability is in how absolutely nuts and irrational most people are.

This is why I’m the type of person who takes the Myers-Briggs personality test for fun and tries to get my friends and family to take it too. And yes, I got a very weird (or at least statistically uncommon) result on that test.

On one of the rare days when my kids were away and I didn’t have to work during the winter break, I indulged in my numb-fog hobby instead of either sleeping (which would have been the responsible choice) or doing something fulfilling or useful. And what I found was an intriguing online study out of Harvard called the Implicit Association Test.

It’s actually a series of mini tests that cover everything from your subconscious preference for light skin or dark skin to your preference for randomly selected previous presidents versus Trump and from your positive feelings toward straight people versus gay people to the degree to which you subconsciously view Native Americans as “American” or “foreign.”

If you’re curious, I turned out to slightly prefer African Americans over white people, have no preference on gay versus straight, harbor a moderately strong assumption of Native Americans as more American than white Americans and (weirdly) I subconsciously slightly preferred Trump to Richard Nixon.

Needless to say, my results on these tests tend to be on the minority side, with the exception of my subconscious lack of interest in the difference between gay versus straight people, which appears to be fairly common.

The results of these tests can be surprising, both on the individual level and when taken as an overall statistic. I went into the race test knowing that the vast majority of respondents present a subconscious bias against African Americans, including more than half of African Americans themselves who subconsciously prefer white people over people who look like them.

The test goes so fast that you can’t really try to control it or even remember much of it, but there was one of the black faces with big, beautiful eyes that looked kind of like one of my friend’s kids, and maybe that’s what tipped the balance for me subconsciously. I’ll never know because the test doesn’t explain why we have subconscious associations, it just ruthlessly alerts us to them.

Many people find that even though they state vehemently anti-racist views and truly believe they are “color blind,” they still have implicit, subconscious biases, even against their own group. This study is proof that we don’t live in “a post-racial world.”

It is one thing to fight discrimination and prejudice through equality laws, but what do you do when the people perpetuating problems of inequity and prejudice don’t even know it or condone it? It’s tough, but there are people whose test results come back without bias or with a bias in favor of those who have been historically marginalized, like mine did.

In addition, though society makes much of sexual preference as a scandalous personal detail, most people actually don’t much care about other people’s bedroom activities, according to the Harvard test results. So there must be some way to mitigate prejudice.

I am pretty certain that, if I had taken this test twenty years ago, the results would have been different. I remember how, as a college kid coming from rural, eastern Oregon, I was nervous whenever I saw a black person coming toward me on the sidewalk.

I had nothing “against” black people. And in fact, I couldn’t understand why they had faced discrimination “years ago.” I didn’t really know any black people, except for my mom’s college friend who died of cancer when I was a child, but I did secretly wonder if the continued ruckus over “race” wasn’t just coming from a few who wanted to “feel special.”

I report this all with a bit of shame, but I think honesty helps. This was my view around 1995. As hilarious as it may sound now, I thought that we were completely “over it” back then. And had I taken the Implicit Association Test on race at that time, I am sure I would have had implicit bias against black people, though I would have consciously believed I was unbiased.

What changed? Both life experience and conscious focus.

First, I spent four months in Zimbabwe as a student, almost always the only white person in a room or on a street. Even though most people were wonderfully kind to me, I learned what it is like to be a highly visible racial minority in a country with hot political and racial tensions. I then spent several years covering racial and interethnic conflict as a journalist, mucking around in every type of divide from South America to Eastern Europe.

Finally, I adopted children who are not white and we live in a country where racial boundaries and prejudices are deeply intrenched. When my children were little, I started to experience first hand how race is truly viewed in majority-white societies. And I started reading copious amounts both on race theoretically and from Black, African, Native American and Asian authors. I chose racially diverse reading and dolls for my children and spent hours to find them, not to mention several times the amount of money necessary to buy “white race” toys.

It has taken years, but now I have very different views than I did as a young student. Not only do I know very well that our society is far from a post-racial world and I am hyper-aware of things like police brutality toward black people in America, I also have gained enormous gratitude and respect for the persistence, courage and patience that so many people of color have given our society throughout history.

That last is what I think made my test result skew in favor of black faces. After two decades of focusing on the positive contributions and articulate stories of people of color, my subconscious attitude has shifted. It is that also which causes so many African Americans to harbor more negative views of black faces.

Most people in our society are not immersed in stories, media and images that present people of color positively. In school or in the mainstream media, one cannot help but absorb mostly negative images of people of color and mostly positive images of white people. But I do not consume much mainstream media and it has been a long time since I was in school.

After all that, of course I was curious about what the test would say about attitudes toward people with disabilities. Popular assumptions would tell us that most people do not really dislike people with disabilities but possibly pity them or objectify them. Despite the occasional discrimination and harassment I’ve encountered which was clearly due to my disability, I thought surely actual hatred was reserved for people of some marginalized racial group or non-standard sexual orientation. I assumed, before seeing the results, that most of my difficulty with inclusion in social groups has to do with my physical inability to make eye contact and read non-verbal cues.

Here again, the results upset my assumptions and those of wider society as well.

I wondered if I would personally have a slight bias against people with disabilities myself. I have a rugged, self-sufficiency streak and people with disabilities often do better in a more collaborative and mutually supportive community. Even I do, though I might wish otherwise. So, I was prepared for the test to tell me I am just as “self-hating” as all the anti-black African Americans.

But that isn’t what happened. I turned out to have a slight implicit positive bias in favor of people with disabilities or at least in favor symbols associated with them.

Only 9 percent of people who took the test share that implicit bias in favor of people with disabilities, while a whopping 78 percent associate people with disabilities with negative thoughts, including roughly half of that number who have strong negative associations with disabled people.

That left me gaping and shocked. The negative bias against people with disabilities outstripped racial or homophobic bias. The words associated with people with disabilities on the negative side were things like “selfish”, “dishonest”, “hate”, “anger,” “despair” and “disgust”. It wasn’t even primarily about pity.

Those results are deeply disturbing to me and my afternoon of casual browsing through statistics turned sour.

To be strictly accurate, let me emphasize that these were the views of nearly 80 percent of the people who happened to take the Harvard Implicit Association test, which is mostly something people run across online or are assigned to do for a class. That isn’t really very comforting, however.

It is likely that if the demographic of the test takers is weighted in some way it is skewed toward more educated and connected people. And these are the people who have such overwhelmingly negative implicit associations when shown images and symbols associated with disabled people. This wasn’t measuring a sample of mostly uneducated or isolated people.

It is particularly concerning given that people with disabilities are usually the last group added or are completely left off of those ubiquitous lists of people we should include and center in progressive circles. I always figured that people with disabilities got left off of such lists or added as an afterthought because people thought we were generally viewed positively and there wasn’t much need to emphasize non-discrimination against people with disabilities.

Now that dismissal takes on a different connotation. People with disabilities are often left out even in diversity culture and when they are added in, it is as a prop, never as a voice. At this point I’m still reeling from seeing these results and I don’t have any idea why there are such negative stereotypes about people with disabilities.

But my own experience with overcoming racist biases makes me think that what we need is a significant, pervasive promotion of the voices, images and stories from people with disabilities with an emphasis on our altruism, unselfish contributions, intelligence, helpfulness, capabilities, honesty and dignity. Without such promotion throughout society, I doubt these attitudes will change.

Marginalized groups in XR: Will you come or will you go?

Macrocosm

Storm winds are surging within the climate justice movement Extinction Rebellion. Just as in a physical storm the clouds and waves are occupied with their own internal turmoil and any given droplet of water within them is both ineffective and blameless by itself.

In October, a small group in London claiming to be part of Extinction Rebellion mounted an unpopular action, blocking a subway station by gluing themselves to trains and climbing on top of trains during rush hour. The rationale behind such actions is similar to the actions blocking bridges and road traffic. The point there was not so much to be against cars as an unsustainable form of transportation. It was simply to sound a high, loud alarm.

The message of XR blockades is “STOP! Just stop business as usual! Pay attention! There is nothing as important as the climate crisis now!”

The reasoning behind it is that the warnings given by scientists, saying that we have a very limited amount of time left in which we can realistically avert massive disaster and uncountable deaths from hunger, storms and extreme heat, are real.

And we either believe that a consensus among ninety-nine percent of the world’s scientists is a serious matter, that facts are real and the laws of physics actually do apply to us, or we don’t. If we believe those things, there isn’t really any other common sense response than to do whatever it takes to bring about changes that might just be able to save millions of lives.

Photo by Arie Farnam

That’s the intention. Extinction Rebellion hasn’t distanced from the group of activists who carried out the London subway blockade because the rules of the movement are also real. If someone subscribes to the ten principles of XR, including non-violence, refraining from shaming, mutual support and challenging power structures, they can call themselves Extinction Rebellion. That is what the London subway blockaders did.

But the vast majority of XR members voiced vehement objections to the action. Some simply felt that the movement shouldn’t target reasonably carbon-light transportation alternatives, such as rail transport of any kind. After all, subways and light rail are the kind of things we need to be moving toward, even if Extinction Rebellion refuses to put out exact specifications for solutions.

The movement insists that a people’s assembly—chosen through a jury system, rather than through a heavily financed election—should decide how we move forward to solve the climate crisis. But rail transport is one of the non-controversial assumptions about what that solution will have to entail.

Others have more complex reasons for their complaints. The trains blocked in this particular action happened to come from some of the poorest parts of London, full of immigrants and ethnic minorities on the way to minimum wage jobs with harsh tardiness policies.

Extinction Rebellion is not immune to the accusations leveled at most environmental organizations that it’s a place for middle-class white people to work out their rebellious streak and generalized anxiety. Extinction Rebellion has made an effort since the beginning to keep a permanent focus on inclusion, but this action felt like a slap in the face to a lot of people of color.

One of the ten XR principles is “We accept everyone and every part of everyone.” It’s supposed to be inclusive and the small print talks about inclusion of every kind of vulnerable group. But some people of color have expressed that they don’t feel nice and cozy and safe when they hear this principle. Instead they immediately wonder if the white supremacist parts of some people might be included in that blanket acceptance statement.

There are other principles that point toward inclusion and much of the in-depth but technically non-binding structural documents that make up the DYI systems to set up XR branches in every city around the world go into detail about cultural sensitivity, inclusion and recognizing the different experience with police that people in vulnerable groups may have. Extinction Rebellion tries, but it is still an attempt at sensitivity by a bunch of white people.

“Rebels”. (as XR members call themselves) have employed a popular chant over the past year when police intervene to force an end to a blockade. “Police, we love you! We do this for your children!” has echoed in every English speaking country as well as quite a few where the words are foreign. In Prague, the Czech rebels at our October blockade yelled it in thickly accented English, while police hauled away 130 of our friends, injuring some.

And yet, black people back in the UK, where Extinction Rebellion started, and across the water in the US have said essentially, “Ahem, that’s not going to work for us.” Love just isn’t happening in the relationship between black people and the police in the UK or the US, where random police interactions with black people wind up with way too many black people dead. Most black rebels in these countries are not even sitting on the blockades and getting arrested.

While white rebels risk a night in jail, a fine and a misdemeanor record, black people risk their lives just walking or driving, let alone poking the police bear. It is less that black rebels don’t want to say the chant as it is that it sounds like white people wallowing in white privilege.

Now, after the Autumn Rebellion, many XR groups online and off are tackling the issue of inclusion. I’m glad they are because I see this as the Achille’s heel of this movement, which has achieved a great deal in one short year. If Extinction Rebellion fails to fuel massive public demand for climate justice at every political level, it will be because we fail the inclusion part.

That isn’t just because we should be good people or that we need the numbers that vulnerable groups could provide by joining us. It is most importantly at the core of what has made XR successful so far. We should include people of color, people with disabilities and all the other vulnerable groups not for their sake, but for everyone’s sake. Everyone has some vulnerability and it is when we see those more vulnerable than us truly included that we can fully commit our energy, time and resources to this kind of effort. Inclusion isn’t just for those we shouldn’t exclude.

When it is there, it permeates the entire culture. When it isn’t there, no one is safe, and social interactions are a constant battle of individuals trying to stay in the center of the herd, furthest from exclusion.

Microcosm

When I first joined XR, I was glad to find that no one made much of my disability. They were happy to try to accommodate my vision impairment by letting me know who was who, and I was so grateful to be treated a bit better than the immediate social stereotyping and dismissal that I encounter on a daily basis in society.

But as time went on and more and more people joined XR, I have watched that early focus on inclusion fade and thin. New people often come from a non-activist environment and they bring with them the exclusionist assumptions of the wider society. Those who have been there longer are tired and desperate to reach some kind of tangible goal. Inclusion starts to feel like a luxury we can’t afford.

I have been reticent to write openly about the difficulties I’ve run into with exclusion within XR over the past few months, because i too am focused on the ultimate goal. But the events of recent weeks around the world have convinced me that we must talk about these things openly. Because it is exclusion that will take us down.

It is not a luxury. It’s the heart of the matter.

There may be a few exceptions, but by and large the people who join XR are open-minded and informed. They are people who believe in science enough to put their regular lives on hold and do something about a crisis that for most of us—in white-majority countries at least—is still largely theoretical. They are also demonstrably people who take personal responsibility and eschew laziness, because rather than simply talking about the crisis, they are doing something.

These factors mean that even though XR has people from both the political left and the political right, most are already tolerant, nice people. They don’t think of themselves as racist, ablest or otherwise exclusionist. Many even consider themselves actively anti-racist or anti-ableist. And a lot of them feel like this should be enough.

But as with the London subway blockade and the police chant, it clearly isn’t. For me, as the only significantly disabled person in my local XR group, I have to agree. My group has been wonderful in consciously working to include me. I truly appreciate that, and yet I know that most people with disabilities in my place would have left long ago and I am constantly close to leaving the group myself.

I asked a friend who uses a wheelchair to join and she just laughed ruefully. I couldn’t really argue. The group says they want a person in a wheelchair at the blockades because it would make for good press photos, but no one has ever even mentioned the fact that we’ve never held a meeting in a place that was even remotely wheelchair accessible. They want a person with a wheelchair as a prop, not as an organizer.

There are two categories of issues I can identify that cause me to feel excluded in the group even without the issue of physical accessibility. which given the conditions isn’t really their fault.

First, there is a tolerance for intolerance, as that principle about accepting all parts of everyone implies. While most people are inclusive and welcoming, there are those who are not and the group not only tolerates them but insists that I must tolerate them. If I speak up, even very discretely about exclusion and hate directed toward me, I am told that the urgency of our goal demands that I tolerate it and don’t rock the boat.

Second, there is a lack of understanding about the effects that exclusion in the wider society have had on me and a marked lack of tolerance for any reaction I have to social exclusion.

In one prominent example, a person in a position of power in my group decided early on that she did not like me. Her explanation focused primarily on communication issues, specifically that some of my texts were too long. Being a writer, I can be a bit wordy, but when I can, I go back and edit. Written communication usually isn’t a problem for me.

But in this case, we were using a phone app for daily communication within the group. I can’t type on the tiny phone screen very well because it is too small for me to see, so I was dictating my texts. This meant that my texts were especially long. When we speak, we naturally use more words than when we write. To add to this, editing on my phone in extremely small print is next to impossible for me. Yes, blind people use audio interfaces that make it technically doable but it is excruciatingly slow. Sometimes i do spend literally hours editing a few texts for the group to make things readable. But most of the time, with my work, household, children and all, I didn’t have time. I just dictated texts and sent them, oral vagueness and all.

So, the dislike this person initially developed toward me was based on something that was a symptom of my disability. She is a person steeped in European good manners and social justice thinking. I am certain that she would never intentionally exclude a person over a disability or some other irrelevant trait. But she did—likely obliviously—develop her antipathy for me over something that was part of my disability.

She and the rest of the group chose to call it “a difference in communication styles,” and despite my explanations, refuse to see it as disability related or reconsider her conclusions. When she initially adopted her negative view of me, I was utterly confused. We had, only one day before, had a wonderful conversation in which she told me that I would be working with her closely and expressed a lot of support for my work in the organization. And then suddenly, I was cut off from communications and told that she no longer wanted to work with me.

She later said that my reaction shocked her. After a lifetime of social rejection and even complete isolation for years at a time, I don’t take abrupt, unexplained rejection well. My first reaction was to cry, then to try to defend myself and later to bargain. For so many people with disabilities social rejection is a real visceral danger and I am no exception in that.

It is understandable then that my reaction came across as out-of-proportion and overly pushy to someone who felt she was simply setting some boundaries with an annoying individual who writes overly long texts.

But here’s the thing. After many months of informal exclusion, I was forced to accept an agreement in which we would be sensitive in our communications with each other and I would stay away from powerful roles within the organization in order to minimize contact between me and this person in power. This was the only way i could stay in the group at all.

That may sound like a reasonable compromise, and it did to most of the local XR rebels. But imagine if this had been a black person instead of a person with a disability. Imagine that someone expressed dislike of a black person because of the way they spoke or dressed or some other cultural attribute and started excluding that person. Imagine then—it isn’t hard at all—that the black person got intense and up in that person’s face because they have been excluded and dismissed way too often by white people, and subsequently that the those in power limited the black person to low-level roles as a means to avoid further conflict.

Realistically, most black people—and most people with disabilities—would not get intense. They’d just leave. That is ONE of those reasons that there are so few people from marginalized groups in XR and similar organizations. But it is not at all difficult to imagine this scenario, because like me, some black people stay and fight.

Now, in the scenario with the black person most anti-racist white people are now educated enough to see the problem and to call this exclusion. We aren’t perfect yet and i’m sure this does happen in Extinction Rebellion to black people. But very few abled people are informed enough to see the same situation clearly when the issue is disability. For whatever reason, that’s just the dynamic.

The end result is that, if I want to continue to be part of Extinction Rebellion, I have to constantly bump up against the antagonistic walls set for me, where I am not allowed to take on national roles in the group. And I have to constantly see the XR messages urging us to put people from marginalized groups in positions of power and to feel their hypocrisy.

There are a very few people of color in our local group as well and none of them have significant roles. I don’t know them well enough to discuss the reasons why personally. But the fact is that our group has the option of putting people with disabilities or people of color in visible and/or powerful roles and it doesn’t. In fact, it has barred a person with a disability from national roles, based on symptoms of the disability and post-traumatic responses to social exclusion.

We’ve got a problem.

And I—like many other rebels from marginalized groups—now have to decide day by day if I stay and fight for the soul of this movement I believe holds our best chance for the future or if I let it go and take care of myself.

Not all opinions are equal

I have always wanted to be for peace.

The peacemakers of today’s well-connected world cry, “Everyone is entitled to their own opinion! Just scroll on past!”

And I find that I cannot be a peacemaker because all opinions are not created equal.

There are opinions about whether this or that candidate is better. There are opinions about how we should manage the city water problem. There are opinions about which health care or tax policy is best. And generally those opinions are all equal. I may disagree with one or more, but I am happy to listen and let live.

It’s when an opinion is hate against a person or group of people due to circumstances beyond their control that it is no longer an opinion, or at least no longer equal.

Many pundits blame social media for the angry divides of today’s society. And I can see why. Social media is where a lot of arguments happen.

But social media is designed to send us what we like. The algorithms of the various sites don’t send us everything available but rather place us in bubbles of mostly those who agree with us. We only encounter a fraction of the differing opinions out there.

Social media doesn’t set out to create conflict. Quite the opposite. But technology has become a great leveler.

I think it is more that relatively cheap and portable technology has given voices to everyone and blurred lines of geography. It makes the saying, “Injustice somewhere is injustice everywhere,” more palpable.

The fact is that the world was NOT less divided thirty years ago or a hundred years ago. It was more divided.

But privileged people didn’t know about most of it and those experiencing the most injustice had only each other to talk to about their exploitation. The world was more segregated and groups deemed unsightly either stayed out of sight or were put out of sight.

Today the world is not any more divided than it was, but we know about more divides than we used to. Opinions and the actions they engendered which harmed less privileged groups were not often challenged because the harmed groups had no voice and no access to the places where the privileged relaxed and talked.

Now that social media is that place and technology has allowed almost everyone in, we are confronted by those we have opinions about. And they talk back..

I grew up in remote, rural Eastern Oregon, an area that voted 70 percent for Trump in 2016 and which was almost entirely white when I was a child.

When my mom first arrived in the area to homestead with my father, she saw a black family at a gas station in the tiny town of Elgin. She went up to them gladly. Black people had taken her in when she had to leave home at seventeen and she was overjoyed to see their faces. But the father told her they were leaving because of the rampant racism and ostracism in the area.

They left and that was that. No more “divide” in the community.

When I heard racist jokes at school as a child, I didn’t call them out the way I do on Facebook. I kept my head down because as a kid with a disability, I got plenty of bullying as it was. It wasn’t a “divide” because I had no voice, no possibility of standing up, and People of Color were simply elsewhere.

Now we see a divide. Before we could pretend it didn’t exist because those who were vulnerable hid it to survive or were so far removed from us that we never saw or heard from them.

Opening up, people who were shut away walking out in public, the formerly silenced having a voice—these things are not divisive. It is not the “evil” of social media that creates the strife.

It is bigotry and judgementalism. It has always been there. Now it is being challenged.

I welcome differences of opinion when they are not about judging and mistreating others. It is really that simple. Not all opinions are equal. You are entitled to your opinion so long as it does not incite hatred or judgment against others for characteristics they did not choose… or even for things they did choose in so far as they have no bearing on anyone beyond themselves.

Ridiculing a person with a disability, accusing them of “faking” or declaring what you think they should not be allowed to do or have responsibility for is not an “opinion.” It’s an attack for the purpose of silencing and dismissing people.

I am fine with discussing health care policy and climate policy and immigration control and medical ethics with varied viewpoints. What is not open for discussion and what will get comments deleted without warning are those opinions which specifically judge and attack people for reasons that are innate to them.

People standing up to judgement, on the other hand, are welcome. Our voices only sound strident or hot-tempered because they are rusty from too much silence.

Fair warning.

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.

No comparison: Privilege is a big deal

It's one of the first warm days of spring. The kids are playing together for once, instead of tormenting each other, and I'm taking full advantage of the moment, turning the soil in garden beds and planting peas and carrots as fast as I can.

Then I hear a horrible screeching from the empty lot next door. There are words in it, though barely.. "Get out... like rats... this is ours." 

There's more but that's enough. It's an adult voice yelling but it is followed by the shrieking laughter and pounding feet of children, fleeing from the sounds of it.

I put down the shovel and strip off my work gloves. But I don't have to search far to find the kids. They are breathless and covered with fresh black dirt. I pry the story out of them. The neighbor lady from down the hill, someone who wants nothing to do with us, yelled at them for playing in the empty lot. 

"She said it's hers but it's not!" my nine-year-old daughter fumes.

Creative Commons image courtesy of Stefan Lins

She's right in that the lot belongs to an absentee landlord and local law supports  recreational use of unfenced land. I pry further though and learn that the children discovered a nice tall dirt pile in the empty lot and they were "sledding"  down it.

Thus the condition of their clothes... and no doubt the reaction of the neighbor.

I explain that the dirt pile probably does belong to the neighbor, even if it's in the empty lot. The kids are unrepentant. They don't understand about the need to keep a load of dirt in it's pile, not spread all around and packed into the sand and weeds. My daughter refers to the neighbor lady in distinctly disrespectful terms. I reprimand her but part of me is also livid inside.

Rats? That's what I heard the lady shriek at them and my stomach is roiling--not with anger so much as with fear.

The kids also don't understand the potential consequences of getting into trouble with the neighbors in this little town, which is already not particularly friendly to children with olive skin and dark-lashed, "striking" eyes. The kids from our street--otherwise all particularly pale white--roam around freely and I've never heard the them scolded by a neighbor,. But my kids seem to run up against hostility on a regular basis. I don't think my kids are exactly angels, but this was the first time I'd heard of them doing something harmful off of our property..

Having a mixed family has enlightened me about many realities I did not used to understand, such as the heightened risk of trouble kids of color run and the fears of their parents.

Most white people don't grok "white privilege" because it is a term that encompasses things that we not only take for granted but feel are merely the way life is. If you go to a coffee shop in clean clothes with money in your pocket and wait for a friend, nothing negative will happen. You go golfing and you just golf. You walk down the street, shop, get in your car and talk to your kid's teacher and it's all placid and uneventful. If you're a kid and you slide down a dirt pile, you might get told off but that will be the end of it. 

To white people this seems like life as usual, simply enjoying the experience of a peaceful and prosperous society. The hitch is that this experience of peace should be for everyone.

After nine years, I know that it isn't.

There was the time my son pushed another kid and nearly got expelled from preschool, even though the teachers agreed that sort of thing happens every day among the boys and my son is no worse than any of the others. He did get banned from school once over ant bites on his knee and the resulting concerns over contagion from "dirty people." My daughter came home at four years old crying because people called her "black" and she was terrified that meant she was going to turn the color black. How was she to know that olive-skinned Roma are sometimes called "black" in lily-white Central Europe?

So I give the kids a lecture I never got from my parents, my voice low and deadly serious. "You treat adults with respect! Period! Do you hear me? You listen and speak respectfully to adults. I don't care if you think the lady is wrong. You apologize and walk away. That's it."

I never needed that lecture, even though I was a wild kid who chased the neighbors cows. I was white. Now I feel like I'm channeling the father in Roll of Thunder, Hear My Cry. 

On the weekend my Nigerian friend from the city comes over and confides in me the struggles of dealing with white teachers in the Czech schools. Her youngest son is under constant attack because a teacher insists he is "dirty"  and doesn't have "basic hygiene habits." 

She's honestly confused. Sure, he sometimes has to be reminded to wash his hands. He's only five. But he willingly goes to wash if told and he's quiet and respectful to a fault, which I envy. 

But I know the Central European short-hand. Whenever they want to question the presence of a child of color in the classroom they default to concerns over "basic hygiene habits." It's like a code phrase. 

Creative Commons image courtesy of C. Thomas Anderson

This year we are more and more aware of the entitlement and privilege that fuels injustice. It is good to see awareness growing. More and more people are seeing privilege and entitlement for what it is--the driving force of deeper injustice. 

The weekend is over and the kids are back in school. On Monday afternoon I get on my electric scooter, which helps me get around since I can neither drive nor walk long distances due to disability. This is how I pick up my kids from school and do the shopping The scooter can move at a walking pace and stop instantly. It works well, even on the narrow sidewalks in our small town. 

The kids walk downtown next to me, except when we have to go single file in the narrowest spots. My daughter has a dance class on the town square. My son and I go into the delicatessen next door to get him a sandwich. The nice man behind the counter greets us in English. We chat back and forth. His English is really quite good.

Then another man--fifty-ish--walks in and stands at the counter. Before our acquaintance can ask what he wants, the newcomer says loudly to the cashier, "Why don't you tell that lady there to get off the sidewalks?"  

My heart starts pounding. Again I am not offended, so much as terrified. This is what I have feared, since a few angry people started yelling at me on the street. I have been so careful, making sure to yield to anyone on foot. The sidewalks are narrow here after all and I'm not certain about the legalities of my situation, since my mobility device isn't actually a wheelchair.

The man behind the counter looks stunned, his eyes wide.

"Please, sir,"  I say to the belligerent customer in as conciliatory a voice as I can muster. "Please let me explain. I'm legally blind. I can't go in traffic. And I can't drive a car." 

The man turns toward me a bit. "I know," he grunts.

"We live on the edge of town. It's two kilometers to get to the pediatrician or the post office," I stammer.

"I know where you live." His voice is gruff and unforgiving.

"I have problems with the bones in my legs and I can't walk all that way. That's why I ride that scooter," I explain.

"I know."  

"I'm very careful. It doesn't hurt anyone." 

His tone has become a bit less confrontational at least. "I know all that. I just think you shouldn't take up the sidewalk." 

"I'm very careful. I always let other people go first if the sidewalk is narrow." 

"Whatever."  He has managed to make a purchase during our discussion and he walks out. 

But the fear is still there. I know my situation is precarious. The local police could forbid me to use the scooter on the sidewalk, since it isn't officially a wheelchair and I can technically walk. I just can't walk two kilometers without significant pain. If these grouchy people complain to the police or if I make a tiny mistake, the consequences could be severe. 

I understand now that it is the same for my kids, even without a disability. Where white kids would get away with a scolding, they could be reported to the police or expelled from school. The stakes are higher and the stress is chronic.