Fat shaming, medical blaming and being "right"

Those who haven’t seen me in a while are often pleasantly surprised these days when they do see me. I’ve lost a lot of unnecessary weight, have more physical energy and am much more clear headed than I was for years. This comes of beating diabetes.

I sort of feel gratified when people remark in my change of health and appearance, but I secretly also feel frustrated. For every person who expresses this happiness for me, there are three people somewhere judging a fat person. Maybe they are even some of the same people.

Even technology seems to avoid overweight people in images. My camera app on Apple devices will show all the matching pictures of everyone thin I know, but displays only the sign “updating” for hours when asked to match pictures of fat people, including me. I tried to find other images to go along with this article on Flickr and similar sites, but fat people, especially fat people looking normal and content, are strangely absent from the internet, despite being all around me in real life.

Now, I’m one of those lucky souls inhabiting a body with a brain that does structure, routine and healthy habits without too much pain and suffering. I sleep seven and a half hours, get up at 6 am, meditate, exercise, cook and eat healthy food, and all that. I’ve done it even while insanely busy with work and my kids’ medical demands, though that entailed a lot of stress. So, you might think I’d be one of those people self-righteously saying, “health is connected to healthy habits,” and therefore fat people deserve to be shamed.

But here’s the catch.

I was fat. And I had healthy habits—or at least I kept the habits I was told were healthy by the medical establishment. I exercised. I ate a “Mediterranean diet” with lots of organic veggies, legumes and whole grains. I never ate fast food and rarely ate packaged food. I hadn't had soda since I was a teenager. I thought positively, I grew my own vegetables, for crying out loud.

But in fact, I can name a dozen middle-aged, fat women I know personally who also have that sort of healthy lifestyle. In case no one has let you in on the secret, life and body shape aren’t fair.

People definitely didn’t immediately assume I was living like that when they looked at my body shape. The overriding assumption in society is that people who have a lot of extra weight are slacking off somewhere, either not exercising or eating too much or eating the wrong things

When I hear people comment on other fat people, I don’t have to speculate much on what the underlying assumptions are, because I shared them up until recently. I never went around openly blaming people for being fat, but I figured focus, effort and good habits played a large role. And by de fault that seemed to mean that those who were fat lacked good habits and self-discipline.

But they often have them in spades.

OK, let’s be clear. Not every fat person does. Many people are not focused, don’t put out daily effort and don’t have healthy habits. There are plenty of people who eat mainly fast food and junk food and that does contribute to weight and poor health.

But there are also fat people who are disciplined and focused. Some are healthy the way they are. Some aren’t.

I wasn’t. But that was because I had a chronic illness that made it so that my body could not process most of the food I was eating—specifically the parts that were various forms of carbohydrates (i.e. sugar). When you can’t process sugar well, your body starts cranking out a ton of insulin (unless you have type 1 diabetes). And tons of insulin makes you fat, even if you eat relatively little and get your exercise.

This is not the reason every fat person is fat. But it was apparently my reason. I was allergic to most of my food. I fixed that, got rid of the food that was causing excessive inflammation and massive insulin production, and that worked… for me.

I wish everyone could find a magic key to their health like that. OK, it isn’t nearly as simple as taking a supplement pill. A large part of my life now revolves around making sure I can always eat food that my body can process well, and in the modern world—so heavy on carbohydrates—that means cooking almost everything myself.

It is both hugely time consuming and very expensive, because mostly what I can eat is fresh meat and vegetables. I have to carry an electric cooler almost everywhere I go. Even a day trip is now an expedition, because I can’t just run across a place to eat or pack a few granola bars.

But still, I was relatively lucky in this. In my case, there is a solution. My last A1C was 5.0. I’m officially in the healthy range.

But I wouldn’t be if I ate so much as a whole grain bread roll or a bowl of beans. My blood sugar would shoot up and I’d feel sick for a few days. I know because I’ve accidentally eaten things I shouldn’t before I realized how exacting my body’s requirements now are.

That means I wouldn’t be in this healthy range if I’d followed the advice of the medical nutritionist my doctor sent me to. She advised me to stick to my Mediterranean diet to “make sure the disease progresses slowly.” The disease, which is considered incurable and eventually fatal, is not progressing slowly. It isn’t progressing at all, because I researched instead of just taking what I was told at face value and accepting that I was going to die slowly.

That’s how I found out about ketogenic, very low-carb diets. I’ve been following a modified diabetic version for a year and a half—with all the recommendations for balancing electrolytes and digestive health.

I wish every ailment had a hidden cure like that. But this doesn’t even work for every type of diabetes, at least not this well.

Even so, it is far from an easy fix. It can reverse all the nasty effects of diabetes, including eliminating neuropathy and improving the immune system. But it is an entire lifestyle change and for most people with type 2 diabetes it has to be permanent.

It is also a lot easier for those type 2 diabetics who were already eating a diet with lots of salads, home cooked meals and plain water. I’ve seen how much people who were addicted to junk food or even just people who never learned to cook for themselves struggle to make the switch. The battle is real.

And then again, there are many people whose health difficulties are different. Different types of diabetes may not respond the same way. There are many other reasons why people become overweight, despite healthy habits.

What I take from this is that we have to take a good hard look at the assumptions we make about others based on their health. Just as we don’t immediately assume every person with lung cancer must have been a long-time smoker, one really cannot know what causes the health problems we see in others are, even if they seem to be preventable.

There may even be a solution—such as my ketogenic diet—which the person doesn’t yet know about. It is often hard for me not to excessively “sing the gospel” about this whenever I meet people with the classic T2 body shape and warning signs. I do let people know I have the condition and that I have found a solution, but force myself not to push too hard. It doesn’t work for everyone for a variety of reasons, and really if it isn’t my body, I’m not entitled to a strong opinion.

I’ve seen many sides of this issue in the last several years. Having adopted kids with a serious neurodevelopment disorder that is entirely preventable and caused by prenatal exposure to alcohol, I often run up agains the question of whether or not to assertively point out that they are adopted whenever I encounter a new health care provider. Sure, that’s actually crucial medical information and they’ll get the memo eventually, but the fact is that if I don’t tell them right off and they see the diagnosis first, they are going to go through a period of making certain very negative assumptions.

And beyond even the level of physical health, my kids’ disability carries with it lack of impulse control, inability to grasp time and organization and difficulties in understanding cause and effect. They will struggle all their lives not only with the real consequences of those things but also with people’s assumptions about their motives. And by extension, I labor under the judgements of others about my “parenting” and why my kids “act like that.”

From being a person who thought I was right a good deal of the time, who thought fat people must be a bit lax and that punctuality, motivation and calm are all within an individual’s control, I have come to question just about everything I thought I knew for sure. I could wish I didn’t have to beat diabetes and parent kids with such tough disabilities in order to become less certain, but I don’t know if anyone could have explained it to me sufficiently without the school of hard knocks to hammer it home.

What do you think? Does hearing about the experiences of others regarding how wrong one’s assumptions can be about another person’s health and behavior second-hand make a difference?

What's wrong with neighbors these days?

Do you know your neighbor’s names? Do you speak to them? Would you know if they were dying? Would you care enough to call someone?

If your answer is “no, no, no and okay, maybe,” you are just plain normal today.

We hear their sound systems playing, their cars starting and their domestic disputes, if we live in crowded areas. We catch glimpses of them getting out of cars or taking out the trash, but little more. If we live in a “friendly” neighborhood, we might occasionally lift a hand in a silent wave.

Creative commons image by Chiot’s run of flickr.com

I’m no different. I have always felt connected to the land, plants and animals around wherever I’m living, including to my human neighbors. But in the past few years, my connection to human neighbors has grown thin and distant. As spring opens up the world, I find myself saddened that I don’t know my neighbors.

There is the neighbor across the street who starts their clunky car every day at precisely at 7:00 am. There is the neighbor who always drives in the back and never appears in front of their house, despite having a carefully manicured front fence and raised flower garden. There is the neighbor who grows a fantastic back garden crowded with vegetables and flowers so thick that it reminds me of children’s stories about secret gardens that shut out the world.

I’ve never spoken to any of these neighbors, though I’ve lived here for nearly two years. I’m legally blind, so it’s hard for me to catch them on the street and strike up a not-so-casual conversation, as others who desire neighborly contact might. I wish I had more connections with my neighbors beyond the snippets of their routines that filter out, but my life has been beyond overwhelming with children’s medical crises, so I have made no bold moves.

I feel a certain kinship with the punctual neighbor across the street. I’m sure he or she is working hard, heading out early in that car with the labored engine every morning. But I’m pretty sure they wouldn’t think of me as someone they’d want to know. They don’t have a high front wall or fence, so they have no doubt seen me with my white cane and my kids with intense emotional issues.

The neighbor with the perfect front flowerbeds maintains them by proxy. I have met their fix-it man/gardener. All last summer, he greeted me every evening and we’d exchange a few words while we tended our respective plots. He wasn’t really a neighbor but we both acted like we were.

The only actual neighbor I’ve talked to is one with plenty of trouble of their own. That house has all the signs that someone there struggles with addiction. It is beaten down and in need of repair. There are loud arguments and broken dishes. There is sometimes noxious plastic trash burned in the yard. But there’s also a woman there who occasionally greets me. I once went to that house to give warning in the middle of the night because I could hear water spurting from their side faucet, which had broken. Ever since, we aren’t exactly friends, but we are on—if not speaking term, then at least greeting terms..

A bit further away in the neighborhood, I have encountered only tragedy--loud domestic violence in one house, then the silence after the woman and children fled, and death by overdose at another house. This is all I know of neighbors two years after returning to my small home town in Eastern Oregon.

Rewind thirty years and I was a teenager here desperate to get away. There were many reasons why I originally left, including the scent of opportunity, right-wing local politics, no public transportation and romantic notions about the rest of the world. But back then, it was normal to know you neighbors. I met my future niece’s mother and aunt across the back fence. Even socially awkward and outcast as I was at school, I knew some near neighbors.

Today, I find the contrast disturbing, not just for myself but for society at large. The only person, besides the neighbor’s gardener who has approached me intent upon making connections was a couple of Jehovah’s Witnesses, who occasionally prowl the neighborhood. Neighborly relations have become mechanistic at best—something only minded when you can get something out of it.

When I go for walks around the neighborhood, I’ll often wave to someone out working on a lawn. I don’t make a big production out of it, just a little finger wave and a smile. So far, they give back only silence. I don’t hear neighbors greet one another either. So, it isn’t just that they’re leery of the “blind lady.” There is a feeling of being on edge, of both distrust and apathy.

Back when I was a conflict correspondent for newspapers, I often had to walk through neighborhoods where I didn’t even understand the local language and “gauge the mood” for my editors on the other side of the world. If my job was to report on American small town life today, I would have to describe the atmosphere as one of “discontent and distrust” or “deceptive calm covering simmering resentments.”

I fear that the problem with neighbors in America goes far deeper than just neighborly relations. Increasingly, when I meet other parents at the Little League field or at a school function, a sense of guardedness and exhaustion pervades. I try to reach out with the same friendly gestures that worked years ago, only to be rebuffed with silence or sideways hedging to get some distance.

Is this about the politics? We’re in a deep red zone in an otherwise blue state after all. Maybe my neighbors feel marginalized or maybe there’s something about me—wild red braids? colorfully patterned clothes?—that gives my politics away as controversial. But I suspect that it is more than that. Even when I visit the big blue city, people are professional but there’s often strain in their precisely polite voices and precious little warmth.

What can be done to bring back a sense of community and neighborliness? I have tried the tactic of simply being ultra friendly. I’ve been the one to bring cookies to new neighbors to welcome them to the neighborhood. And I might do something like that again, once my life is less of a rolling crisis. But even when I was doing that a few years ago, the reception was distinctly cold and suspicious.

I don’t believe the solution is simply individuals putting themselves out there and being warm and friendly. That doesn’t hurt, but it won’t change the core of the matter. I’ve seen other nations in times of hopelessness and this is what despair on a large scale feels like. I’ve also seen nations that have recently thrown off tyranny, filled with hope and optimism. And those are the places where I have seen strangers play cards while waiting for busses or neighbors lend a helping hand to the elderly. The level of hope in society is closely tied to neighborliness.

I don’t know how to restore hope to a giant country like the United States. It used to be that people in America believed they were lucky and blessed. Even when our systems were messed up, we seemed to believe they were at least the best that could be had. Now, I hear Americans disparage the services and authorities that hold our communities together, just as Russians or Eastern Europeans do with theirs. It’s a symptom rather than a cause. The systems are not actually any worse than they once were. It’s the optimism that has frayed.

I do know that hope is fostered by connections to nature, by finding small moments of beauty in life, by authentic connections to other humans who are doing something beyond themselves. These are the things I seek for hope and I only know how to keep looking.

And meanwhile, I’ll be the friendly neighborhood oddball who sometimes eats meals on the front porch, waves at people she can’t see, talks to gardeners and listens for anyone in need.

Why? And does why matter?

A mother holds her baby, gazing at every detail, memorizing every quirk and curl. And then… there is something wrong, something “off.”

The fear and doubt that enters the mother’s heart is insidious, and the way our culture is, the mother inevitably wonders if it is her fault.

This happened with my mother and me, in the most literal sense. My mother found that while holding baby me, I didn’t look at her. Being a young 25-year-old mother on her second baby, after a very “easy” first baby, she says she was sure it was because I didn’t like her and she was a “bad mother.” We chuckle about this now, but ruefully, because mother blaming is still a painful issue today.

Image via pixabay

Even so, because she was a good and attentive mother, she took baby me to the local doctor, who dismissed her concerns out of hand. She says she was a flaky, self-absorbed young mother, but the next part of the story doesn’t bear that out She lived in a tin-roofed shack with no indoor toilet and had no money or influence, yet somehow she got me seen by a specialist ophthalmologist over the mountains in the next state when I was just six months old.

And sure enough, her mother’s instinct was correct. There was something wrong. I was almost entirely blind. To make a long story short, I still am. This was 1976 and it has never been that surprising to me that nobody knew why I was blind. There were a lot of medical things people didn’t know back then. But I’m somewhat less blasé about the fact that doctors still don’t know why—nearly fifty years later.

When I was a small child, doctors speculated about something called “ocular albanism.” Essentially, while everyone is familiar with albinos who have white hair, extremely pale skin and weak eyes, there are even more rare types of albanism which only affect the eyes. And this was their best guess about my vision impairment.

However, that generally only happens in families where ocular albanism has cropped up multiple times over the generations. It’s the type of genetic disorder where both parents have to be a carrier of a very rare trait in order for it to occur in a child, which is why it most often happens when the parents are already closely related. And still, even if both parents are carriers, there is only a 25 percent chance that a child will have the disorder while 50 percent of the children will be carriers for another generation. And if one parent is not a carrier, the children are unlikely to even carry on the genetic marker and will never manifest the disorder.

Yet, no one knew of anyone on either side of my family having significant vision problems. Back in 1976, doctors just shrugged and moved on. There was so little known about genetics at the time.

My mother also wondered about other possible reasons for my eye problems—her stress during pregnancy, exposure to something someone might have slipped into her orange juice or maybe it was “bad karma.” Mothers almost always do this—doubting and berating themselves when there is something amiss with a child.

But recently, I was given the opportunity to undergo extensive and focused physical and genetic testing to try to understand once and for all, why my eyes are the way they are. Fortunately, it is one of those things interesting enough to science that studies will cover the exorbitant costs.

I’ve already undergone three days of intensive physical testing—ncluding painful and bewildering eye exams, a test I call “the most boring video game ever” and a very strange experiment that involved sitting in complete darkness for thirty minutes and then having fine wires draped inside my eyelids while flash bulbs and strobe lights broke the darkness abruptly.

But that’s not even the fun part. Doctors have also asked, repeatedly, about every health hiccup I’ve had or my family has had in known history. In the case of my extended family, the information available is rather scarce. There was enough conflict and trauma in my grandparents’ generation that we had very little contact and no intimate knowledge of family history. As kids, we simply got the impression our parents had both been lucky to survive and get away to start a new life.

But now some digging is required, at least, if I want to find an answer and possibly allay my mother’s irrational pangs of guilt. When I returned from the latest round of testing and endless questions, I took a walk on the ridge where my parents live in a tricky April Fool’s blizzard. Then, chilled and red-cheeked, I stopped in at Pa’s cabin-come-workshop.

He asked about the latest trip to the city and I explained and told him about some of the questions. For Pa’s benefit, I mimicked the hypersensitive geneticist: “We need to determine if there were any… er… particularly close connections, I mean, such as between one branch of the family and other…ahem…”

They had gone on like that for quite some time, trying to hint but also clearly concerned that being hillbillies from the eastern “red” part of the state of Oregon, we might both be likely candidates for the problem they were trying to describe without naming it and also incapable of understanding subtlety.

Mama, having missed the context while dealing with my kids out in the waiting room, jumped in and started trying to parse what exactly the question was. I was by then quite tired, and I cut to the chase, “Mama, they’re asking if we’re inbred.”

The doctors were shocked into silence, but the sad truth was that our knowledge of our family tree reached back scarcely two further generations. At least in that snippet, there is no more sign of inbreeding than there is of albanism. And my parents hail from opposite sides of the country.

Finally, I turned to one of the doctors and again voiced the thing they were likely thinking but unwilling to say, “Well, but my father’s family was out in Eastern Oregon for generations and there simply weren’t that many people around at the time.” More shocked silence.

I related all this to Pa, while giggling and shaking snow off of my shoes.

But then he said, “Actually, I’d better show you something.”

He’d been doing some genealogy work and it had progressed quite a bit further than I’d thought. He showed me the record for his paternal grandfather, a man I had met as a child, who was an unredeemable racist but also a collector of fascinating objects from around the world. And from there he traced the lines to his two great great grandfathers and…. ONE… great great grandmother.

In short, my great grandfather had had two half-siblings as parents.

At first, I was thrilled, thinking perhaps we had found the key to the puzzle, but a bit of subsequent research showed that an event like that is far more common in the human population than most people think and it is very unlikely to still have dramatic genetic effects four generations later.

Of course, the doctors studying my strange and rare vision problem cautioned me that there is only some incalculable chance that the genetic testing might find a gene that could be supposed to be responsible for my difference. And if they didn’t find one, it didn’t mean that it wasn’t a genetic problem. It would simply mean that we would continue not to know.

The fact that even with all of these tests and trips across the state to the big city, we still may never know brings up the question of how much it matters.

The reason for my difference never mattered a great deal to me when I was younger. I wasn’t the kind of kid who wanted to be “like everybody else” or even “to fit in.” My older brother and I were proud of our parents’ counterculture break with the past and wore our otherness on our sleeves. My younger brother did suffer a bit, especially since we scarcely paved the way to normalcy for him.

Neither of them had any significant physical differences though. To me as a kid, it was just a fact of life. I couldn’t see the deer or the stars everyone was always going on about. Maybe it would have been too painful to look at too closely, so I held it at arm’s length and laughed brazenly at it.

So, I would never drive. Driving was overrated. I’d move to Europe instead. And that’s just what I did.

But as the years passed, I found that the reactions of people to my vision impairment—whether in the US or in Europe—were quite distressingly negative. Far from seeing it as a not-all-that-interesting minor nuisance, as I did, or even from seeing it as a hardship, the endurance of which might be admired, it was almost universally something that caused me social pain and ostracism. That, much more than any difficulty with physically seeing, became something I wanted an accounting for.

And then, there was the unexplained infertility. That hurt. I didn’t laugh at that. But I did put my chin up and soldier on, accepting my lot after six years of battle and tears, and then filling out adoption applications because “I don’t come from quitters.”

As hard as my own social isolation was, it was minor compared to the pain of finding that both of my adopted children have more serious disabilities. It can’t be genetically linked but that fact has reopened the question for me.

So, does why I’m visually impaired matter? Well, it might matter some.

I do have seven biological nieces and nephews, who according to doctors, could be carriers of the same rare thing, if the genetics theory proves to be correct. They might care to know, and if science lets them, I’m not averse to it. While I think my physical, congenital vision impairment is not all that bad compared to society’s reaction to it, social responses to it show little sign of great improvement.

The fact is that unlike some people who take on disability as an identity, it is not my identity. It is just a thing I deal with. If someone showed up with a reasonably safe cure, I’d be all for it. If someone could prevent any potential great nieces or nephews from dealing with the same thing, I’d be happy for that as well.

But I don’t have to know. If, as is likely, we find nothing conclusive, we will be no further along than we are now. The testing will either show that there is a genetic link—whether or not it is connected to great grandpa’s inbred parentage—or it will be simply unclear, which would mean I will remain a mystery.

Words have power--to heal and to harm

The receptionist spoke in a hard voice. “Your son will be there, but you are not welcome at the appointment.”

“But he’s only twelve.”

“You can wait outside,” the desk worker stated without inflection

I felt my world shrinking, the walls of fear and ostracism closing in tighter around me. This wasn’t the first time I’d had this sort of reaction for no discernible reason. For years, reactions to me have become harsher and judgements of me more negative, even with strangers.

What had I done? I barely knew them. Sometimes it feels like there must be a sign emblazoned on my face, which I alone cannot see, declaring that I am a horrible person. My developmentally disabled child needed the medical therapy provided by this clinic, so I went ahead with it despite the humiliation and lack of clarity.

Creative commons by michael karrer

I took a deep breath and forced myself to stop thinking negatively, to focus on solutions rather than problems, to recognize that I’m doing what I have to for my kid with complex needs. I told myself it probably wasn’t me at all. Maybe they were having a bad day. I steeled my voice and words to remain courteous.

Afterward, I was careful not to dwell on the issue of being banned from my son’s medical appointment. I do meditations on gratitude, positive self-image and mental protection each morning without fail. I believe in that stuff—not slavishly—but I have seen that attitude counts for a lot and meditation provides vast reservoirs of self-mastery.

Yet, I suspect that it is the very laws of “positive thinking” that have been undermining me. There isn’t a sign on my forehead, but I have been absorbing a lot of negative energy—not by choice, but nonetheless.

I am, at the very least, living with kids who have undergone massive trauma which has caused significant psychiatric disturbance. A major symptom of that disturbance is that they spew insults and verbal abuse at the person in closest relationship to them (and that’s usually me). The children I adopted spent some time in Eastern European orphanages, and like many with that experience, they develop very conflicted responses to anyone who takes on the role of a parent.

The modern gurus of “manifesting one’s own reality” love to talk about how positive thinking can reshape even the hardest situations. They tell us to repeat affirmations three times every morning, in order to embody good qualities or to encourage good things to happen. If you repeat that you are loved and wealthy and successful, you will by virtue of “good vibes” attract a loving partner, make more money and have career opportunities showered upon you. Or at least you’ll have more of that sort of thing than you otherwise would have.

Both empirical scientific studies and a great deal of anecdotal evidence show that—mostly—it works. Whether you think positive thoughts, hear positive things from others or even listen to a recording of a stranger saying generalized nice things to you, there are dramatic health, social and sometimes even financial benefits.

Some people believe it works because of magic or “energy.” Others believe that a person with a positive self-image simply attracts positive reactions from others due to psychology. It’s science then… if subtle psychological science.

The weird, rejecting reactions I’m getting could be based on negative thinking. The proponents of manifesting reality say that people who think negative things create “self-fulfilling prophecies.” Maybe I am to blame after all in a round about sort of way. If positive thinking has real beneficial effects, then a person experiencing something negative probably just needs a more positive outlook.

Both scientists who study positive thinking and the affirmation gurus agree that negative thinking can cause detrimental health and social effects. If one is constantly pessimistic or under chronic stress, the immune system is suppressed, one is likely to appear less attractive or competent and one will have less motivation to do necessary things that promote physical, economic and social well-being.

The problem with this theory is that I have always been optimistic, motivated and self-confident. Early on, it might have been partly naiveté, but it was also enthusiasm and sheer belief. That positivity carried me through quite a few scrapes I had no right to glide through unscathed.

When I was a young journalist, I was dedicated and utterly convinced that if anyone could break into the Big Time of international newspaper reporting, I could. Physical setbacks and the industry-wide restructuring after 9/11 finally forced me to change my goals, but I managed not to take it as a personal failure.

When I wanted to have kids and the first warning signs of health problems arose, I sat in the waiting room at the fertility clinic overflowing with gratitude that I was only there briefly, that I wouldn’t have to suffer the long battles I saw so many of the other patients undergoing. When I failed to bear a child to term over a devastating six-year struggle nonetheless, I moved on to adoption with the unquenchable optimism of my fire sign. I knew that despite the perils, I would succeed here.

If solid belief in one’s capability and propensity for good fortune was truly the key to success, I should not have encountered so much hardship on my path. And when I did, instead of giving up or becoming bitter, I took up meditation and spirituality to carry me over troubled waters.

The thing no one wants to admit in positive thinking theory is the impact of negative statements from others. Just as listening to positive things said about you bolsters health and resilience, the reverse also holds true, especially with a lot of repetition.

We see that effect in advertising, which leads to poor body image and a host of health problems, even if one dislikes and distrusts advertising. And there the statements are subtle. It isn’t even saying explicitly, “You’re fat and ugly. Buy this if you want any hope of being worthy.” It merely implies that, and we have seen the social impact of that kind of psychological programming.

Still, it is rare that proponents of the theory of “thought created reality” acknowledge the influence of a consistently negative environment. It’s understandable that this is downplayed. After all, you can sell books and recordings with positive affirmations or even with warnings against negative thinking. You can’t sell a way to avoid a negative or abusive environment. But just as positive thoughts and words create reality, the constant drumbeat of denegration and ostracism can drive a person’s health and fortunes down.

And just as with those recordings of generalized affirmations from strangers, it doesn’t entirely matter if the negativity and verbal abuse comes from a credible source or not. One insult from someone deeply loved and respected could have a big negative impact. But even from a stranger, someone you don’t believe, or in my case, from a traumatized and immature source, a constant stream of insults takes a heavy toll.

A few months ago, someone did a straw poll in an international support group for caregivers of kids with similar disabilities, where verbal abuse of caregivers is one of the top symptoms, along with a need for constant supervision, rages and difficulty with empathy. Most of the parents and caregivers who had children with this type of disability for more than five years had developed serious chronic health problems that had not existed before.

The old childhood adage goes “sticks and stones will break my bones, but words will never hurt me.” But that turns out not to be as true as we would like. One word or two or even three certainly shouldn’t break the psyche of a healthy person. Positive thinking, meditation practice and other supports can all mitigate the stress of verbal abuse. But if they are relentless and constant, degrading words will wear away the most solid shield.

It isn’t all or nothing though. I had troubles before the verbal abuse began. Some of my difficulty in breaking into highly competitive field of international journalism stemmed from discrimination because of my disability and because I was a woman and because I wasn’t from a traditional publishing-industry family. But I was treated with respect and appreciation by most people, nonetheless.

My initial health problems were likely just a fluke of genetics. But there was a time when my adopted children were very young that some people close to me began to denigrate me with insults and prejudiced statements about my ability to parent with a vision impairment. This spread to others ridiculing anything I said about current events, because I was a mom with toddlers and no longer a somewhat successful journalist.

When my kids were little I was careful not to expose them to derogatory words, and that made it all the easier to tell when they repeated the words of those who derided me. And because of their trauma and developmental disabilities that pattern of verbal abuse grew and grew. It also grew because of the aura of negativity each successive wave of degradation wrapped around me.

Despite my fiercely positive attitude, this negativity wore away at my mental and spiritual defenses, until my health started to mysteriously deteriorate. Today, I can see the dramatic effects with complete strangers, like those at the clinic.

The automatic response of most people when I speak today is to discount and dismiss at the outset. It doesn’t help that my children’s attachment trauma affects only their closest relationships, and like many children with this kind of history, they put on an angelic mask around others. It is hard for outsiders to believe the verbal abuse is as extreme or as persistent as it is.

Several people working with my kids professionally have become staunch allies over time as they have seen the truth of the situation, through personal experience with us. And yet, there is something around me that picks up negativity, distrust and blame like lint in a dirty clothes drier.

I often feel the exhaustion and sickness creep over me late in the day and I berate myself for my thin skin. They’re just kids. It’s a symptom of disability. They don’t understand half the words they’re repeating. Neurologically, they can't imagine themselves in someone else’s place and understand how they would feel if these vulgar insults were hurled at them day after day.

And yet… it’s like affirmations, except in reverse. I can’t help but be affected.

In my positive thinking, I’m always trying to find some silver lining to bad situations, and throughout all this I have learned a lot. I’ve learned that words can be violence. Words truly can heal and words can harm. I feel powerless at times in the face of so much loss.

But it is worth remembering that words have power. As long as one can speak or write, that power cannot be entirely revoked.

Looking to the New Year: Bragging about survival

One of my favorite authors, Morgan Daimler, recently asked her followers on social media to brag about something accomplished in 2022 (and she specifically mentioned that survival can count).

She’s pretty popular and got a lot of responses, so I didn’t read all of them. But I read a dozen or so, which were all about people going back to graduate school, writing books and publishing—all things I wish I was doing, all things I “should” be doing. I was tempted to just pass on by. Many things on social media are just not for me, and I generally only grab a minute to read any of it when I wake up at 5:45 am and try to force my exhausted body out of bed early enough to do meditation before kid-chaos ensues.

Creative commons image by eric wustonhagen from flickr.com

But then I thought this was kind of a meditation exercise anyway. Morgan definitely phrased it in an open and non-judge-y way. I took a moment to calm my mind in the predawn darkness and imagined what I could possibly brag about.

My first thought was, “Well, I managed to continue my spiritual practice every day, no matter what, come screaming kids, Covid, ice storms or any other chaos.” I’ve done it for about seven years now, but I usually miss at least one day due to illness and I think I had a perfect record in 2022. That means that despite my momentary procrastination on Morgan’s post, I did manage to kick myself out of bed early enough every single morning.

Similarly, “I didn’t miss any of my full moon blog posts.”

Dear reader, you hopefully have no idea how nip-and-tuck that often was. Writers, like all creators, are kind of supposed to make it look easy, but I never finished one of these when it wasn’t the last minute and I was propping my eyes open, trying to find typos. Even though that’s a far cry from publishing another book, in my current state, I do actually feel like patting myself on the back.

Then, once my brain was thinking a bit more constructively, I remembered a bigger one, “Oh yeah, I fought back a lethal chronic illness to officially 'healthy’ levels by maintaining a very restrictive diet that requires constantly cooking from scratch.”

That would be the diabetes I was diagnosed with at the end of 2021. I had an A1C of 6.9 at the time. 6.5 is officially diabetic and many many people have far worse stats, but diabetes is a huge killer, shortening lifespans and decimating quality of life. So, the fact that I fought it back to an A1C of less than 5.5, which starts the “pre-diabetic” range, without the use of any drugs, is no small thing. Granted, some experts will tell you that nothing above a 5.0 is “healthy” and I will never be “cured” because I will never be able to safely go off of this restrictive diet, but I cut down a whole host of horrible risk factor statistics nonetheless.

That may not exactly sound similar to graduate school or publishing a book, but I’m betting the research I did around it was post-graduate level. And the workload as well as the odds against me were definitely in line with publishing.

So far, I had been shying away from the part of my life that has been the most overwhelming and distressing this year—my kids’ neurodevelopmental health problems. That is, of course, what makes any of those other things at all remarkable. Most years, I could complete a monthly blog post without breaking a sweat (or propping my eyes open). Kicking diabetes in the tush might have presented a challenge any time, but it’s the 2-3 hours every single day that I have to devote to cooking specialized and separate meals that is the real kicker with that. And that’s only a huge burden because of what the other 21-22 hours of the day are like.

So, I gritted my teeth while I admitted that I also had to brag about “survival” as Morgan had suggested. This is because I am something of an unreasonable perfectionist. I am fine with other people being proud of surviving difficult circumstances, but that isn’t generally “good enough” for my ego, I’m ashamed to say. I know it’s silly and Morgan is absolutely correct. I should be able to be proud of surviving, but I’m honest enough to admit that that was a struggle.

Nonetheless, “I survived parenting two adopted young adolescents with FASD.”

After a moment’s thought, “And I got them both approved for developmental disability services in one year.”

I know for a fact that no one who hasn’t done this has any realistic way to know what the first part of that entails, but I also guarantee that anyone reading the second bit who has actually parented kids with FASD likely needs to close their mouth, which is now gaping in shock if they kept reading at all.

I’ve written about the specifics of FASD before and I’m not going to bog down another post with it, but suffice it to say, that I still maintain working in a war zone was significantly easier and less stressful than parenting kids with this particular neurodevelopmental disability.

As for getting those kids into “Developmental Disability Services” in the US, it is a huge bureaucratic process requiring multiple medical and psychological evaluations, lengthy assessments, multiple thick packets of tiny-print forms and months of waiting and then hurrying, waiting and hurrying at just the right moment. To get one done felt like a mammoth task. The second one got approval just days before the new year, meaning that I accomplished both in one year from medical exam to stamped eligibility letter. Several professionals mentioned that they’ve never seen it done faster.

The reason it’s a big deal is because those services will finally provide the specialized medical, psychological and educational help we left the Czech Republic and came to the US for. Finally, one kid is getting and the other will soon get real individualized, human support, including someone to guide them through understanding their neuro-diversity and learning to work with their strengths rather than constantly driving themselves (and their families) into the ground just battling their disabilities.

It is not expected to be “easy” by any stretch of the imagination from here on out. But it just might be sustainable over the long-term, if all the pieces I’m now juggling will just fall nicely into place.

Oh, and at the end, I remembered another little detail: “I moved out of a basement to a nice above-ground abode, in the midst of all the other stuff.” That, naturally, involved a lot more than just boxes, boxes and more boxes. It also involved a lot of bureaucracy since I had to gather the finances to make the move possible as well.

I put it all together and finally I did feel a little spark of pride for the first time in far too long. In the kind of life I’m living, the life of a professional medical patient and mom of patients, it is very hard to feel purpose or progress or anything but a running battle where you’re always losing ground. There were many things lost, despite those accomplishments, far too many and too depressing to list here, but still, it was a good exercise to look back and consider what had been accomplished in one year.

I encourage you to try this meditation as well, in some calm, quiet moment of this new year. What can you brag about? Don’t forget to brag about surviving the things that were truly awful. Don’t forget about fending off illness or building good habits or mastering endlessly nit-picky systems.

The flip side of that is then looking forward to the new year with some modicum of hope, strategic planning and intention. Most of the things in my world are still far too uncertain and half-baked to allow for me to plan ahead. I have filled out the initial application for a guide dog for the blind, so that may be an accomplishment possible in 2023 if I’m exceedingly lucky.

I’ve also been seriously thinking about graduate school but the important deadlines are upon me and I am not even remotely ready to apply. Nor do I know if my more-than-full-time job parenting kids with developmental disabilities will have eased due to the promised respite services enough by next summer for me to actually go back to school if I did get in and get the one and only scholarship available.

As a result, it likely won’t be in 2023 that I go to graduate school to become a writing instructor. But if not now, maybe the next year. For now, I am taking one step toward preparing. Many bloggers set up Patreon accounts for readers to support their writing, since writers are so often broke. Patreon contributions, however, will actually undermine a person with a disability due to social security restrictions. Instead, I have set up what is called an Able Account. This is a specialized account that will go toward allowing me to go to graduate school.

A few people have asked me how they can help out in these difficult times, so here at last is that way. Go to my Able Account page and follow the instructions. Even $5 is a step toward my education goals and it also helps me to be able to write more for you. All of my readers have my deepest thanks, whether you can contribute this way or not. If you can though, it goes a long way toward the day when I will be able to write more books.

I wish you the promise of unknown possibilities in the new year!

Dancing without flight - Short story

Brian lounged against the sofa, sipping a beer. His friends floated above him, talking animatedly and slowly spinning in the air as a group. Lisa caught his eye and glided toward him, her smile sweet but a little forced, as she reached out her hands for his and moved her body, pretending she was dancing with him.

He grinned and reached toward her, but she motioned for him to stand. The couch was low, more of a mattress with cushions really—fine for people who move effortlessly through the air. But they never seemed to understand that, muscular and fit as he was, it was irritating for Brian to have to scramble to his feet from the floor. Not to mention that his body ached from keeping up with them all day. He really wanted that beer.

But dark-haired, quick-eyed Brian was always game. He put down the beer and pushed himself up, trying to make it look easy. But he staggered as he got to his feet, and Lisa’s hands went to her mouth. “Oh, sorry, Brian! I didn’t think…”

“I’m fine!” He chuckled and swayed crazily on purpose. “Ya know. Brian, the klutz. And there’s the beer too.”

She wiggled in the air and then flowed around him languidly, stroking his cheek as she passed with a gentle breeze. “Your legs are sooo strong!” Her send gushed. “People think gimps are weak but they’ve never seen you hike over that ridge, like today. No wonder you have muscles.”

He smiled, a bit less broadly. This called for some modesty. The flavor of her send wasn’t fake exactly, but she did want gratitude. He ducked his head and managed to blush a little, by thinking of what she might actually look like undressed. Not that he would ever find out. And he carefully shielded that thought, as well, making sure not even the littlest hint slipped out.

“Liiiiisa!” The send was drunken and raucous. One of the other guys calling her back.

She giggled and gave Brian a parting smile.

Brian sank back on the low couch, making sure his face showed only mild amusement. Afterward, he would come to realize that that was the evening when he became aware of how much he pretended for the benefit of abled people.

Lisa and several of the others came to lounge on the couch near Brian but mostly turned slightly away from him. It wasn’t on purpose, not really. Most people just weren’t very aware of him. He rarely added much, except to laugh at other people’s jokes or clowning around.

Chad, a tall, handsome guy, popular with the girls, was talking long and loud about a professor who had given him a bad grade on a paper. “That ground crawler!” Brad’s send simmered with righteous anger. “He thinks we don’t have any other classes.”

“Chad!” Lisa flapped a hand in front of her face, feigning shock, as she cut her eyes at Brian.

“Well, obviously, not like you Bri,” Chad dismissed it. “You’re not an idiot.”

Brian laughed and patted Lisa gently to ease her discomfort. But the awkward feeling didn’t dissipate until Brian noticed it was time for him to catch the last shuttle. He left without forcing anyone to say goodbye. It was more than an hour later, sitting on the slow, clunky night shuttle, that Brian let himself clench a fist in anger. Yeah, it was a shitty term Chad had used.

“Ground crawler.”

That was the expression people used a lot to mean “idiot” or “asshole.” It wasn’t that they necessarily thought flightless people were stupid, though Brian knew a lot of them did wonder. His disability wasn’t neurological though. His wings had been severely injured at birth. It was a purely physical disability.

And Brian accepted his lot well enough. His parents had been matter-of-fact about it with him when he was a kid. They didn’t want him to develop self pity. There were shuttles for the old and infirm or for people with several small children. He could use those.

Because most flighted people lived in towers and much of the social life went on many floors above the ground, there was often a pulley system for bringing large furniture or supplies in and taking garbage out. Brian carried his own harness and clipped in to get up to his friends’ apartments or even to a lot of classes without stairs, though these days universities were required to build stairs to make the buildings accessible for the disabled.

All the hiking, using garbage pulleys, going the long way around to find the one staircase in a huge university complex and all that was a nuisance. But now that he no longer lived with his parents and in the shelter of their social group, Brian was starting to realize that was the least of his worries. His classmates and friends, even most professors, saw first and foremost the way he was nailed to the ground, awkward, clunky and forever limited.

It galled, especially completely unconscious, seemingly innocent comments like Chad’s. People used “ground crawler” or just “crawler” or “mud” as derogatory terms for all kinds of things. And mostly Brian was fine with it. It was just an expression. The people using those terms probably weren’t even remotely thinking about him when they did. But he was starting to realize that the attitudes behind that kind of expression did most definitely affect him.

A couple of weeks later, he was in an interview for a summer internship with a science lab. He’d seen the interviewer’s face stiffen when Brian came in, walking… on the floor. The supervisor’s questions lacked enthusiasm, despite the fact that Brian knew his grades and previous experience were the best in his class, likely the best in the whole biology department at the U.

When they moved on to the tour of the lab, he saw why. The whole place was set up for flight. The lab was completely 3D, work stations positioned on the walls of a giant amphitheater, information charted on screens hung in the middle, screens one had to move around to see all of. It would be laborious to reach the work stations with cables and pulleys. It would be impossible to quickly reference the screens without darting around in midair, as several lab techs were doing while Brian watched from below.

He let himself be shown out. They said they’d be in touch. They weren’t.

Brian had always resisted getting involved with “disability organizations.” He figured they were for people who weren’t able to integrate themselves into society. He was strong, smart, adaptable and in excellent physical condition, except for his wings, which he wrapped against his back to keep them from flopping around uselessly.

Creative commons image by randomix of flickr.com - an image of a Man dancing on a glacier

The night his attitude shifted yet a bit further was supposed to be a big celebration. Brian, Lisa, Chad and their whole group of friends were going out to a party put on to celebrate the end of term. It was also Brian’s birthday, so he thought he’d consider it a kind of a birthday party as well, maybe even let it slip at some point and Lisa or someone would propose a toast. That would be nice.

Lisa and two other girls even glided low on the way there to stay within sight of Brian as he hiked through the snow-clogged utility areas between the towers, spaces reserved for service trucks, construction crews and waste removal. But when they reached the gleaming new tower where the party was being held 200 feet off the ground, Lisa streaked up to ask about the pulley, since it wasn’t visible.

And Brian knew before she came back down quite a while later that it was one of those “out of order” situations. Who knew if it really was busted? Sometimes they just didn’t want to deploy it. Anyway, they’d refused, insisted it was a private club. They weren’t required by law to always have the pulleys operational. They were very sorry.

So was Lisa. She looked downcast and truly torn as her two girlfriends took off toward the party. She bit her lip and looked troubled. Brian wasn’t about to tell her it was his birthday to boot. He wanted real friends, not pity.

“Go on!” Brian sent with forced bravado. “I’m going to enjoy the walk home. Clear my head. No big deal.”

She waved and followed her friends. Brian felt conflicted inside. On the one hand, it felt wrong that the whole group should have to change their plans, if just one of them was barred from the place. But on the other hand, he couldn’t help thinking that they would have been furious and all refused to enter, if it had been someone else for some other reason, such as the club wouldn’t let in Black people, like Chad’s buddy Leon, or trans women like Lisa’s friend Erin. But when it was because they didn’t want to unroll all their cable, that was just kind of sad—if you were Lisa—or not worth even noticing—for most.

Brian walked in the gently falling snow, not homeward but further on between the towers, The lower floors were almost all used for technical stuff and there were few lights, but there was a big moon that cast a pale radiance on the snow. He shoved his hands into his pockets and kept a steady pace to try to walk off his irritation and loneliness.

Being mad will get you nowhere with friends. He’d tried a few times when he was younger—with his best friends in high school—just to ask for some small shift in plans that would let him go with them. And they were quick to take offense. Some of the guys had accused him of “faking” or at least not trying very hard, saying he was just playing for pity or else too lazy to go work out, which they thought could have cured him.

Others had argued vehemently in Brian’s defense, but even those had stopped seeing him as a close friend to hang out with and come to see him either as a cause to fight for or an “inspiration,” because of how he wouldn’t let distances or physical obstacles stop him.

Brian’s boot slipped and he staggered, barely catching himself and looking up from his bitter ruminations. That was the self-pity his parents had always warned him away from, he supposed. And here was something to lift his spirits. A flat expanse, a dusting of snow over hard thick ice. He remembered now that there was a lake in this area, between the towers. He’s swum in it freshman year in the summer. But it was the end of winter now and the ice had been frozen solid for weeks.

Brian slid out onto it, one foot then the other. He crouched and then pushed off with one foot, twirled. The ease of motion reminded him of the way abled people flew. He started to hum under his breath. With no one out there to see, he felt free to move. He took a couple of test stomps on the ice and then started to move to the beat of the song in his head, one of his favorites from the audio-radio. Tap tap tap, slide, tap tap tap swish!

The song wasn’t actually very popular. It was one he liked because of its staccato rhythm, like fast walking. Fliers had nothing very staccato in their world. Everything was smooth, and their music and dancing was like that, always gliding, always liquid. Brian liked foot-tapping, even knee-slapping music. He kept going out onto the ice, moving with the rhythm and then jump and slide and spin.

He fell, of course. But it wasn’t bad with a bit of snow on the ice and no one to see his clumsiness. He got up and went at it again until his breaths came fast and a cloud of frozen mist rose up around him. He wasn’t even the slightest bit cold anymore.

“You… fun… beauty…”

The send was disjointed, barely containing words. Brian stopped instantly, his hands falling to his sides and his slide turning into a slow turn.

“No… stupid… stop…”

“Yeah, you think I’m stupid, do you?” Brian hurled the thought into the darkness.

“I’m stupid, not you!” The sound slashed through the quiet night with shocking abruptness.

Brian spun around. There, on the lower ledge of one of the towers at the edge of the lake, sat a girl—slight and tan with blue tinted hair. And she’d yelled at him. No one yelled with sound, unless they were doing a comedy routine on TV and wanted to depict someone completely anti-social.

Technology had made using voice and sound more common. Yeas ago, Brian knew, it had been just a secret code for the mind blind. But today, people watched videos and listened to audio music. With advances in education, now everyone knew how to speak and understand audible language, not just sending. But still except for long-distance communication and recordings, which could not be done mentally, audible speech wasn’t used and especially not in a shout.

The girl fluttered down to him, her face twisted up into an expression of distress.

“Sorry… sorry… sorry,” she sent.

Brian put his hands in his pockets until she touched down near him, skimming across the ice.

“I do apologize,” she said in a quieter tone. “I shouldn’t have interrupted you.”

“Why are you talking?” Brian sent to her. “I’m not dumb, you know. It’s my wings that don’t work.”

She shook her head and looked down shyly. “Please speak out loud. It’s really not my thing, sending. I can’t do it much at all. You saw. My thoughts don’t send well, and I receive even less than I can send.”

“Really???” Brian’s voice creaked. He’d spoken in class exercises but never to friends.

“Really.” She grinned at him. “I’m mind blind and mostly mind dumb. Just the way I was born.”

“Oh, damn. I mean,” Brian struggled for the spoken words, “You’re not… I mean, that sounds like calling me a crawler.”

She laughed, a tinkling, sparkly sound. “True enough. You sure weren’t crawling just now. It was beautiful. Really. I meant it. That’s why I got a bit over enthusiastic.”

Brian shook his head. Audible words came stiffly to him. He wanted to express in some diplomatic way, that he understood that she was being kind, but that she didn’t have to. Fliers were always more beautiful than his clumsy movements. Instead he just shuffled his feet around.

“I mean it,” she said, as if she could pick out what he hadn’t even sent, let alone spoken for her benefit. “Flying can be beautiful, but when we push against something, push away, we just keep going. There is something so beautiful in your movement. You… always return. You… you move like a heartbeat, in a rhythm.”

The wistful way she said it did make it sound like something worthwhile or even admirable. Brian glanced up at her. Her face glowed with enthusiasm. She actually meant it.

“I’m Carrie, by the way,” she said, putting out her hand. He automatically responded, clasping hands the way fliers did.

“What are you doing out here?” he stumbled, trying to think of something relevant to say. “It’s sure cold for flying.”

“It is,” she nodded. “But most people at parties won’t talk the way I can hear. I go to the U, so I’ve seen you around. But I guess, I gave up on social life a long time ago.”

“You? You study?” Brian was trying to construct in his mind how that would work. The professors always sent. There were videos and recordings and all but mostly you had to sit in class and receive sendings from the professor and the other students.

“Yup, I study.” Carrie grinned, looking just a little smug. “I have a tablet that turns the professor’s sends into a kind of code, designed for the mind blind to communicate. It’s just squiggles on a screen or even on paper. It’s called writing.”

“Wow! That’s amazing!” It actually felt like Brian’s mind was expanding as new realizations and understandings settled in.

“It isn’t perfect, of course,” she chuckled with a sideways look as he turned back toward the towers. “The computer makes mistakes and it’s slow. If the prof talks on and on, it gets seriously behind and starts skipping random parts, which can be a problem. But it’s better than nothing.”

Now, they were gradually moving off of the ice toward the shelter of the buildings, Carrie hovering near and Brian sliding and skidding as he went.

“I guess I haven’t let myself think about how much I have in common with other people with disabilities,” he admitted finally. “I wanted to think I’m just physically disabled. I mean, like, at least I’m not mentally disabled. You know, as if that is really the big divide, not between the abled and all of us together.”

Carrie nodded, flitted around a corner and pushed a buzzer to open a large garage door low on the tower they were near. “We have a way in for… well, gimps of all kinds.” She coughed out a laugh. “This is my place. We even have stairs. You’re welcome to come up. And yeah, I know. You’re not the only one to feel that way.”

“I really… I mean. I don’t mean to be offensive.”

“Not at all,” she said, her warm eyes showing that she really didn’t mind. “It’s the world we live in. We’re taught to judge each other as less than perfect. Flying and sending are so-called normal. But there could be a world where everyone walked and used sound to communicate. There, we’d be normal. My body and brain seem fine to me, as long as I’m with my mind blind friends. And you sure look like you have a good body.”

Brian went through into the warm entry room and started up the stairs—the most normal thing in the world, and the rarest.

Still dressed up: Greeting unknown humans with stubborn positivity

I was waiting my turn at the check-in desk at the chiropractor’s office on Samhain (that’s the day after Halloween for non-Pagans). I can’t see much with my funky eyes, so I don’t know precisely how it happened—whether the receptionist glanced at me or what—but the person ahead of me turned around, looked me up and down in an exaggerated way that even I could see, did a dramatic physical double-take and declared in a negative tone, “Watch out! She’s still dressed up!”

I was a bit taken aback and befuddled, so all I managed was to mumble, “I’m not actually dressed up.” The lady turned back around and ignored me, finished her business and left.

Image via Pixabay - Image of a woman’s face covered with colorful paint

When I shared this experience, a lot of my friends expressed shock and outrage or said I should have made a witty comeback. I wish I was that quick on my feet and I could think of several afterwards, ranging from, “Well, at least my costume doesn’t impede my ability to be polite!” to “I’m so glad you noticed!” with a little faux preening. But unfortunately, past social trauma makes me go into deer-in-the-headlights freeze mode when things like this happen out of the blue.

So, my witty comebacks are usually all for naught. And the truth is I wasn’t that upset about the comment itself. Afterwards, I could certainly see the argument of several friends that it is never okay to randomly comment on a stranger’s appearance. That really is social skills 101.

But I can’t help pondering more deeply. I was clean and had street clothes on. I was wearing a head scarf of no particular cultural background. I wear them as a personal reminder of oaths to my gods, so it is a bit of a religious head covering, but frankly, I also wear it because I have bald spots that often show, despite having long hair.

I was also wearing a colorful tunic and a long black sweater over it that could have been mistaken for a very vague imitation of something out of Harry Potter. And of course, I was carrying a white cane.

So, more than a witty response, I wish I’d asked, “What part makes you think it’s a costume? Really. Just curious.”

Was it the colorful headscarf and shirt which only sort of matched because they used the same color combination but in different patterns? Was it the black leggings and sweater? Or was it the white cane?

I did see a meme about a pilot dressing up as a blind person, using a white cane as he boarded the plane and entered the cockpit in front of passengers. I’ve got to say that I hope that wasn’t why she thought I was in costume, because that’s not okay. If dressing up as Pocahontas isn’t okay, then dressing up as a blind person isn’t either. The same type of disrespect is involved.

If it was either of the other two or a combination… Well, I guess that would imply a bit of small-town thinking on the part of my fellow sufferer of back pain. But I expect my getup would not have generated much comment in a larger city, even if manners didn’t censor most people’s impulses. I have certainly dressed in more flamboyant things and rarely get a comment.

Maybe that’s just because my outfits are considered so outlandish that it’s awkward to mention it. And really, since I’m not applying for a job, that’s okay. I try to tone it down a little when I go to advocate for my child’s special education needs, but otherwise those who dislike my free-spirited, definitely-not-up-to-date fashion sense too intensely are welcome to weed themselves out of my overly chaotic life.

The truth is I’m just tired of trying to please people all the time, especially when it appears to have no effect on anything. I know that I have some disadvantages in social stuff by being visually impaired. I can’t make eye contact. I can’t recognize people. I can’t smile and wave at acquaintances.

That all creates a lot of awkwardness, some hard feelings and misunderstandings at times and so forth. But I make sure to tell people this. And I smile a lot. I devote a lot of time and attention to making sure sighted people will feel comfortable with my expression and hedging my bets on whether or not I know them, as well as when and how to ask them to let me know who they are in a sensitive way.

An unflattering selfie of me to show what I was really wearing at the chiropractor’s office

But mostly I just try to be friendly and positive. With all the bureaucratic, medical and special education stuff my kids and I have been dealing with I have to see and interact with a wide variety of people every day, many of them strangers and many of them acquaintances who have seen me a few times. I smile and do small talk when appropriate. I I give complements whenever I can find a way that isn’t awkward. I may be frustrated with their whole bureaucracy, but I still smile and compliment the person in front of me.

And yet, the responses I get from people are so often negative. There are a few exceptions, but they aren’t friends. They’re just people who are polite and friendly back at me. And they are definitely a small minority, one in ten or so.

Some days I do worry that this is all because of me. Is the negativity of my circumstances so intense, that no matter how much positivity I put out, it hangs on me like a stench? Are my clothing or grooming choices truly just beyond the pale? Are my eyes and lack of eye contact so disconcerting that most people can’t get past it, despite gentle reminders that I’m not doing it on purpose?

All that wondering leads to a lot of anxiety and self-doubt. But I remind myself daily that it also leads to naval gazing and self-focus. The truth is that people are mostly wrapped up in their own troubles and likely not paying that much attention to me (or anyone else).

But that leads me to the final option for why I run into so much negativity on a daily basis. If it isn’t me but I’m still encountering negativity constantly, then it’s just out there and everyone is suffering from it. That may be a psychologically healthier way to look at it, but it’s also way more disturbing.

With the crises of climate change, war and so much trouble in the world, I could wish the negativity was due to something simple like my fashion choices. If it is true that the world is just full of so much resentment and isolation that everyone is experiencing what I’m experiencing from others, we’re in bigger trouble than I ever imagined as a young activist for positive changes in the world.

How do we stand a chance at ending wars or reversing environmental destruction, if friends rarely meet in person, people don’t form new friendships beyond school, people look at strangers with judgement and resentment first and a circle of trusted friends or family is a rare luxury that few experience?

I fear that this is the real reason for the social isolation I experience and for much of the big troubles of our world. As much as I was frustrated with older people who said things like this when I was a young activist, because I wanted big changes first. I see now that we will never manage any lasting or worthwhile big changes until people make changes in their spirit and how the relate in community.

I can tell you from the experience of someone who could never see other people’s faces so the world is eternally full of probable strangers, that it is hard to keep smiling kindly, keep greeting people with generosity, keep open the belief that the next vague unknown form you meet may be a dear friend. It’s hard but necessary. When sighted people—when enough of everyone—starts greeting the world the way well-adjusted blind people greet the world, maybe, just maybe, we’ll have a chance of solving some big problems.

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.