Open letter to the disability advocacy movement

I am writing here as one of the poster children of this movement, as a person who truly owes my chance at even the most basic education to the movement. In April 1977, when I was exactly one year old, a group of disability rights activists occupied the federal building in San Francisco for 26 days with minimal food and supplies (and what they had was donated by the Black Panther Party).

The direct result of that protest was the implementation of Section 504, the foundational document of civil rights for people with disabilities in the United States, including the right to attend public school which was not at all assured for blind students, like me, at the time. (See the documentary Crip Camp on Netflix for further info.)

I am writing to those who carry on that tradition in myriad capacities—activists, advocates, teachers, lobbyists, policy makers and everyone else still working hard for the civil rights and equity of people with all kinds of disabilities. I write with overwhelming love and gratitude. And I also write with concern and to raise a flag of caution.

Image of a camp fire and sunset from my solo backpacking trip in the blue mountains of eastern oregon - photo by arie farnam

We have come to a time in this movement where we must be very conscious of what we are doing and who we may inadvertently exclude or abandon. This movement was founded on ideals of radical equality. We are for all people with disabilities and no one is too disabled to be outside our concern.

When I entered school in 1982 in a tiny rural town in Eastern Oregon, I entered a school that had still never served a child with a visible disability, and they didn’t want any. It was a small rural school without great resources and this seemed like a lot of extra work.

But Section 504 was law by then and unwilling and unfriendly as the school administration might have been, I went to school. All through the ‘80s, I fought “the good fight.” And when I say I was a poster child, this is literal. There were several disability rights posters with a photo of me in a tie-dyed shirt and giant glasses peering avidly at a computer screen at a distance of one inch. I knew about them and I approved. I wanted to be included everywhere. I subscribed to the demand for universal integration and the belief that people with disabilities could do anything anywhere.

In 1990, the ADA opened up more opportunities for me and I pressed every advantage, went to college and graduated suma cum laude. I was determined to “show them” (i.e. those who hadn’t wanted me in elementary school and anyone else with an ableist tendency). I was loud and proud. I would just barely admit that I wasn’t going to be a pro-basketball player or a jet pilot, but that was about it for concessions. Instead, I decided to become an international newspaper correspondent and spent several years tramping around war zones while neglecting to mention to my employers that I was legally blind.

I have written incessantly on this blog about the social exclusion that people with disabilities so often face. And this month I started taking a course to help me become a more effective parent advocate for my kids, who both have developmental disabilities. From poster child to foot soldier, this is my movement.

But becoming the adoptive parent of kids with Fetal Alcohol Spectrum disorders has shaken some of the fundamental slogans of that movement for me, slogans like “integration first” and “dignity means the freedom to take risks” and “self-determination at all cost.”

Those things were important to me as a visually impaired student and dare-devil young adult. So what’s the problem?

The problem is that each disability affects a very specific part of a body. Mine affects my eyes. It is ableism then to restrict activities that rely on or can rely on other parts of my body. It would be unacceptable to restrict me from being a parent, because of fears that I might not “see” my toddler swallowing an object and choking. Blind parents keep their toddlers safe by both carefully cleaning and listening with specific attention. There is nothing that says parenting is primarily about seeing.

It’s a different matter though when it comes to driving. Driving does rely very heavily on seeing and so far we don’t have an alternative that makes it safe for a blind person. So, that is specifically and legally denied to us and that, in my view, isn’t ableism, even though I expect people with my level of vision impairment to exercise good judgement and stay the hell away from steering wheels without being legally forced to. So, essentially, I’m okay with that law.

Now, let’s take another example, Let’s say a person with ADD wants to be an air traffic controller and they have the training and otherwise qualify. There are some pretty hairy attention and focus acuity tests you have to pass to do that job. Should people with ADD be legally barred?

No, there’s already a test. Some people with ADD may not be able to focus in the way needed for air traffic control. Others may actually be better at spreading attention across the entire field and thus ensuring they don’t miss peripheral input that could be essential. They should take a test that simulates the actual requirements of the job, like everyone else, and be hired or not based on that, not based on their disability.

I’d even be willing to adopt this standard for vision and driving. What if you just had to take an exacting simulation driving test that included poor light situations, sketchy traffic and small children running out into the road, instead of being qualified or disqualified based on your ability to read a chart in an office? Maybe a good idea! (But I’m still going to flunk either way.)

Most disability advocates ought to be on the same page with me so far. But there are underlying assumptions in the disability rights movement that were so deeply engrained in my thinking that they took years and incredible pain to extract.

We often assume that only certain human faculties can be a legitimate disability. Everyone, regardless of disability, can strive and work hard. Everyone, regardless of disability, can make their own decisions and exercise self-determination. Everyone, regardless of disability, does better with more information and chances to learn. Even, everyone, regardless of disability, is better off when fully integrated with able-bodied peers.

I used to believe these things with fervor. I still wish they were true. But they are not true for everyone.

It’s relatively easy for people to understand that any part or capacity of our physical body can be disabled. But it’s harder for people to grasp the complexity of brain-based disabilities.

Most of us have learned that dyslexia is a very specific thing that affects a person’s ability to process written words. It often has a few other side effects, but we get that a person can be dyslexic and struggle terribly with reading and still be extremely smart and capable in other mental areas. My husband and my brother are both dyslexic and both are college grads and very possibly smarter than me.

ADD is harder for non-experts to grasp, but the diagnosis has become so prevalent that I’m betting you can accept that ADD and ADHD affect very specific parts of the brain that govern attention and focus. Again, different people may have a variety of side effects along with that central effect, but people with these brain differences actually score higher on average on standard intelligence tests than the norm. It’s a disability that is located in the brain but it does not make a person unintelligent any more than my vision impairment renders me completely physically incapable.

BUT (and this is a really tricky “but") brain science has progressed far enough for us to understand that there are specific parts of the brain and brain faculties for everything we do and for every human quality. Importantly in this case, there is a part of the brain governing what are called “executive functions.” This is essentially the control center of the brain and it is essential for making decisions, understanding logic, time, and cause and effect, regulating impulses, emotions, desires and everything else the brain does, and even driving the ability to get motivated, prioritize or cope with frustration.

We are used to thinking of these things as “moral” issues. A person either makes good decisions, shows up on time, controls their anger and momentary desires, makes an effort, shows motivation and swallows frustration or they just deserve what they’ve got coming, which is nothing good from us or from society.

A person with profound developmental disability may have some disability in making decisions but generally not beyond the rest of their mental abilities. As a result, even though they have difficulty making decisions, their general cognitive difficulties are obvious to themselves and others. Hopefully, we accommodate them and they are able to realize their limits and accept help with decisions (like whether or not to rent an expensive apartment), much the way I accept that I can’t drive.

You know who doesn’t have the kind of good judgement about whether or not they can make a decision without help that most developmentally disabled people have? Drunk people. Yup, that’s right. Alcohol attacks this very specific part of the brain, the center for executive functioning. More than any other drug, this is where it strikes.

Now, before you get up in arms about how drunks don’t deserve a level of social protection that would divide the disability rights movement, let me remind you that there is a group of people, a very large group in fact, that suffers from the disabling effects of alcohol permanently and without ever taking a drink—babies born to mothers who drank while their were pregnant.

It is no surprise really that, if alcohol disrupts inhibitions and decision making, lowers cognitive abilities, regulation, motivation and responsibility levels in a person who drinks it, it will also attack those same parts of the brain in a fetus. As we’ve all been told at some point, there is no safe amount of alcohol in pregnancy. While more alcohol generally creates worse effects, it depends on when exactly in the development of the fetus it happens and likely on many other factors.

To be clear, I am talking about just one specific disability. But it is a disability that according to neurologists affects 1 in 20 people in the United States. It is more common than autism and at least as disruptive to daily life. It is also much harder to correctly diagnose and accommodate.

Many people with Fetal Alcohol Spectrum disorders (FASDs) throughout history have been written off by their families, communities and society at large as unmotivated, lazy, uncaring and immoral, because society misunderstands that their lack of regulation and the disruption in basic logical concepts is a disability, not a choice.

An example came up in the disability advocacy class I’m taking. The instructor repeated our movement’s call for self-determination of all young adults with disabilities. Everyone deserves to make decisions for themselves and most decisions worth making involve a certain amount of risk. “The freedom to take risks” is a popular buzz term in disability advocacy.

Several parents, myself included, raised concerns, however, explaining that policies our movement is pushing at state and national levels are directly harming people with FASD because they do not take into account the diversity of needs. A one-slogan-fits-all approach will abandon these vulnerable members of our community to the prisons and homeless encampments where far too many FASD adults end up because our society judges their disability as moral failings or lack of effort.

When parents of teens with prenatal exposure raised this concerns in class, the instructors shot down each one, dismissing the concern as “overprotective.”

I know the scourge of overprotectiveness has hounded people with disabilities for far too long. Much of my success and independence as a legally blind person is the result of my parents’ very liberal parenting in a natural environment where I was allowed to “run wild” with sighted kids. It is also the result of all those years of “passing” for sighted as a young adult and thus avoiding many other potential protective barriers. I met other visually impaired kids at summer camps when I was a teenager and was shocked to find that many who could technically see better than me couldn’t walk on slightly uneven ground unaided or cross quiet streets or climb trees.

These are examples of risks that many parents want to protect a blind child from, fearing that we cannot see the dangers. But blind people with full executive functions know their own limits better than anyone else. It isn’t the seeing that is most important in this risk taking, it’s the assessment of limits and testing of cause and effect. I didn’t rush out and jump off a cliff when I was a kid, even though there were several handy. I explored at my own pace. I learned to throw pebbles ahead of me to test the ground, since using a stick on such uneven ground as our mountain backyard wasn’t feasible. I remembered keenly every rock and hollow and hole in the meadows and every tree and fallen log in the woods. That was how I ran free as a kid and it taught me skills that translated into adult independence.

But my disability was in seeing. My children’s disabilities are in exactly the tools needed to take measured risks. They cannot test cause and effect and gain from it. They cannot explore and then predict. They cannot remember past mistakes and avoid pitfalls the next time. They can improve a little in this with development, but not through “effort,” any more than I can try harder to see.

I’ve been criticized by disability advocates for saying things like this and accused of insulting my children. This is like saying it is an insult to a blind person to insist that it is not appropriate to hold up a printed sign they can’t see. My kids have all kinds of gifts—in social interaction, in athletics, in fashion sense, in just working hard at tasks others might find too boring. But just as I cannot receive information through sight very well as a legally blind person, there are channels that are disabled for them.

Those are partly sensory and partly cognitive, but they are precisely the channels our society leans on most heavily by forcing people to make hundreds of snap decisions each day, deal with contradictory stimuli intended to trick people into impulsive behavior, always consider the long-term effect of our actions and navigate attempts at manipulation and exploitation.

Upon moving to our small town two years ago, my son was picked out as “an easy mark” by a local drug gang within a few short months. The ringleader intuitively understood that this twelve-year-old couldn’t foresee consequences. He gave him candy and compliments, and then asked him to carry packages for the gang. My son was talked into taking hundreds of dollars in cash and distributing it to “friends” at school. He didn’t make decisions in order to end up in these situations. He responded to social interactions and the predictable dangers were not apparent to him. He could not look at the possible implications or resist the temptation of immediate inputs and his strong desire to be accepted. As hard as it may be for others to swallow, these faculties are the core of his disability.

When my children become young adults, the disability rights movement as it stands today would have them decide whether or not they want a parent or guardian involved in their decisions or whether or not they want medical care or developmental disability services. They respond to momentary feelings of comfort and discomfort, rather than long-range cause and effect and they cannot conceptualize either time or the implications of decisions. A young adult with FASD may have a true long-term desire to be employed and live independently, but when it comes time to leave for work, being able to recognize the time and overcome the momentary unpleasantness of getting up early both directly challenge their disability.

An adult with FASD can be misled, defrauded, exploited, made homeless and left with out health care far too easily in our society, especially when our movement insists that each person is able to make their own decisions and spur of the moment decisions are considered definitive.

At thirteen, my son is caught up in the disability services system, which by state regulation in Oregon, insists that he should have sole decision-making power with regards to his finances. At thirteen.

Okay, you may say that’s not so bad, since he doesn’t have a lot of money and I should be the one saving for his future. That’s fine. I’m not even concerned about some serious savings plan. But he talks regularly about wanting to buy a toy drone and fly fishing equipment. These are real interests. He saves his money and works hard to plan for these things. But when he enters a store with one of the disability workers who often take him places, the rules say he can buy whatever strikes his fancy and they have a card with his money on it. And because his disability affects impulsiveness, time sense, number sense and cause and effect, he cannot conceptualize the cost to his long-term goals of buying every shiny trinket or junk food marketed to tap into his impulses.

The rules say that the disability services worker can discuss the purchase with him and remind him of his plan to save, but they have to help him spend his saved money on impulse buys if he insists on it. And he generally does because his brain lives in the moment.

To be frank, I wouldn’t do this to ANY thirteen-year-old, but so much less to a thirteen-year-old with this type of disability, and yet this is one of the rules that the disability advocacy movement has “succeeded” in forcing into state regulations. While a parent has decision-making power when it comes to the finances of most youth, I have no say in my son’s case because his developmental disability puts him in a category where “self-determination at all cost” is the law.

Even more disturbing is the Oregon law that now states that children as young as fourteen can make their own medical decisions, including refusing medical care. At the age of sixteen, they can make all health care decisions for themselves and keep these secret from their parent or guardian. There is no accommodation for children with developmental disabilities in this law, and the disability advocacy movement continues to push for ever heavier burdens of decision-making to be placed on the most vulnerable children.

My daughter is approaching the age of fifteen. She has medication that helps her to function enough to attend school most of the time and to live in a family environment safely. But the effects of the medication take days or even weeks to differentiate. These time intervals are far beyond her grasp. She can only decide to take medication or undergo other medical care based on her momentary experience of it. And a lot of medical care isn’t fun in the moment.

My daughter doesn’t yet realize that it is possible to tell a doctor “no,” so we just do what doctors recommend. But like many individuals with FASD, she has a strong aversion to authority and particularly parental authority. Given the emphasis by the disability advocacy movement on educating developmentally disabled youth about their right to refuse parental authority, she will learn soon. Neither of my children will choose help from parents or guardians now or in the foreseeable future. And the decisions they make on the spur of the moment are not in their true interests or even their real desires. They are the symptoms of the disability.

I want my children to be able to be independent. I want them to make their own plans and have goals and dreams. They do have these, and as best I can, for the moment, I protect their clearly stated plans, goals and dreams from the impulsive symptoms of their disability and from the bewildering, manipulative and exploitative corners of society.

One of the things often said by medical experts in FASD is that if someone wants to help a person with FASD, they must provide “a surrogate frontal lobe.” And this is what I attempt to do. When I’m saving for necessities or long-held desires, and I see something attractive that I keenly wish I could buy, my brain’s executive functioning center says “no.” When I feel great reluctance to undergo dental work, my brain’s executive functioning center in the frontal lobe makes me do it anyway.

My children can’t and aren’t medically expected to be able to do that for themselves. It is no different from me not being able to see. To throw them to the wolves of our society where one’s executive functions are often the only protection, is no different than putting. me behind the wheel of a car on a six-lane freeway.

I’m not likely to be chosen to coin slogans for the disability advocacy movement But I hope that we can remember our roots in radical equity as envisioned by the pioneers of our movement in 1977. They embraced disability as a fact and an identity. They asked accessibility and to seen as more than just their disability. They did not ask for their specific disabilities to be ignored or dismissed as irrelevant. All of that still applies today, and neuroscience backs it up.

Disability can affect any part of the human body or brain. Each person with a disability is different and is still a person with value. We ask that our lives, health, safety, access, inclusion, freedom and prosperity be as important as anyone else’s. We ask that when society has set things up for a certain type of person and that set up threatens the life, health, safety, access, inclusion, freedom or property of an individual that society makes changes to protect the individual’s rights. That’s it in a nutshell, ins’t it.

We have differentiated between equality and equity in our movement. Equality is saying everyone is allowed to use the steps and come into the building. Equity is making sure everyone has realistic access. Equality is saying “every person should make their own decisions in a manipulative and exploitative world and they can choose to get help or not.” Equity would be saying, “every person should have the support they need to truly make their own decisions.”

Parents, guardians and helpers of people with FASD are not being “overprotective” when we say that these individuals need real and definitive help with decision-making and risk taking. We are recognizing their specific disabilities and attempting to honor the decisions, desires and goals they express at times when their disability is not being directly challenged by stimuli they can’t process. We need the disability advocacy movement to acknowledge this disability for what it is and stand with our children. Insisting on slogans that harm the most vulnerable, because they sound good and work for most of us has already caused harm and it will continue to, if we don’t change course.

A giant movement is like a massive ship. Turning something this big wont’t be easy. But we can adapt, as we always have, to ensure that none of us are sacrificed for rhetoric.

Taking action with what you've got

This post has turned out to be a kind of sequel to my July post about the limitations of taking action under adverse circumstances. I didn’t actually plan it this way, but here it is.

Having children pretty much always takes a lot of a person’s choices away—or at least it should. There are examples of parents who go off to do their own thing and voluntarily leave their children to be cared for by others, but barring that, parenting generally means a lot of restrictions on one’s own choices. Parenting kids with developmental disabilities multiplies that constraint many times over.

I did try to make my own choices within those boundaries while my kids were growing up, but the limited range of possible choices felt very restrictive at times. I couldn’t go to graduate school, travel or even work a solid job. I couldn’t choose what I was going to eat without the significant expense and time outlay of making separate meals. I couldn’t up and go someplace for a few days. On the vast majority of days, I couldn’t choose what I wanted to do beyond a few minutes early in the morning.

Night camp with the lights of the grande ronde valley - image by arie farnam

Events came and happened to me. Life got incrementally and sometimes suddenly harder. Any steps I wanted to take, even just to get help for my high-needs kids, were many times harder than they would have been alone. It was like slogging through knee deep mud while wearing chains. I rarely felt like I could take any particular action to change my life for the better. Now, that both of my kids are temporarily in other households, bits of my own agency have returned to me.

This return has dawned on me gradually. In the first weeks, it was all I could do to recover and put my home back together—as if after a hurricane. Then, a couple of weeks ago, I was sitting in my special chair by the window, enjoying morning chai and the golden light on the tree outside after my meditation practice, and that part of my mind began pining for the mountains again.

This comes on me every few months. I spent a good part of my youth backpacking either in the Blue Mountains of Eastern Oregon or in other countries around the world where I travelled. I loved being in the mountains far from cars and crowds, especially in Eastern Oregon where the natural environment is so magical, wild and relatively clean. The yearning came back that morning with a vengeance, and I was so used to just sitting with it and accepting it as a longing which cannot be fulfilled, that I didn’t go beyond that for some time.

When my children were very small, backpacking wasn’t an option. Even before that, I found that my health difficulties were making it complicated. Whenever I went on a hike with friends, my body ached and my feet were so sore by the end of the day that I was in extreme pain and couldn’t enjoy camp life. I was always too slow for the rest of the group and the length of the hike was beyond what I could handle.

Once my kids were old enough, we did take them camping fairly often, but it was a grueling ordeal. Their disabilities made camp life even more arduous than it usually is and their hygiene even harder to keep up to a bare minimum. At least one of them refused any kind of hike, so we always had to car camp in crowded, noisy campgrounds. Again, for various reasons, it was mostly miserable.

What I long for is not car camping next to a bunch of drunk college kids. It isn’t even hiking 15 miles with a 30 pound pack at a pace that is swift enough that I have to keep my eyes glued to the trail to keep from tripping. The more I thought about it, the more I realized that what I yearn for is not that unreasonable, at least not in my current situation.

I am no longer a young girl, afraid to be alone. I enjoy solitude. I have the skills to deal with the mountains. And if I hiked five miles, instead of fifteen, I wouldn’t be miserable and I’d still get away from the noisiest campgrounds. I no longer have to take kids with me who refuse to go to natural places or who can’t stay safe in a camp situation—at least not every day of the week. And for the moment, my work is flexible enough that backpacking doesn’t have to be restricted only to weekends when I have kid duty.

It hit me like a sudden revelation. In this case, despite the many barriers and difficulties, I can do something to change my life in a way that will make me happy.

I realized that one other thing that has held me back with backpacking is always having crappy, second-hand gear. So, I researched and saved and pinched pennies. And I was able to buy not just a new sleeping bag and pad but the type I actually want—not the top of the line necessarily, but a pad that is rated for people with back problems. And my gear is light enough to carry without making those problems worse. I ordered an ultra-light tent for just one person. I’m not going to count on anyone else coming along.

But the tent hasn’t come and the warm season is nearly over for now, so I borrowed an old rickety tent with a busted pole and a makeshift rainfly and tested out the rest of my gear on top of Pumpkin Ridge. I was delighted to find that the specialized pad really is much better than the old, twentieth century gear I’m used to. I made tea and watched the lights in the valley while the sounds of the meadow rustled softly.

While I lay in the dark, coyotes howled off to the west—a sound I find comforting, though I’ve seen others panic at it. I know from experience that coyotes won’t mess with a camp. Around about 4:00 in the morning, I was awakened by the thud of hooves nearby in the meadow—several elk or deer passed through. And again, I could be confident they would keep their distance.

To be clear, I am arming myself with high-end pepper spray and hope to soon have a dog. Taking action on your own is not about being reckless. But there is a great deal to be said for finding a way to do what you want that is not reliant on others or on circumstances.

A big part of what has made this possible is the improvement of my health, but that too has been a matter of taking the metaphorical bull by the horns. I am nearing two years on a strict ketogenic diet modified for diabetics and the results have been astounding.

My doctor has taken to telling me “whatever you’re doing, just keep doing it.” Another doctor wants to claim the original diagnosis must have been wrong because “no one can beat diabetes like that.” But I know I haven’t actually beaten it. It will come back—not just eventually but within hours—if I fall off the wagon, which I’ve found out by making the occasional unintentional mistake.

As the sun peeked through the pines on the ridge, I heated water on my tiny, lightweight stove, added tea powder, MCT oil, butter and dehydrated coconut. It makes for a fortifying, healthy, ketogenic drink that keeps me running for hours in the morning. I did my exercises on the ridge top, balancing in various poses above the crackly leaves of mule’s ear and the spiky dry grasses. Then I shouldered my pack and hiked down again.

Since my child-care duties have been relieved a bit, I’ve started a daily exercise routine, primarily to strengthen core muscles. I go to acupuncture and the occasional massage to help the arthritis in my spine. I can’t guarantee I’ll always be able to backpack and it took two years of hard work to get even to this modest level of fitness again, but this is my version of taking charge of my life.

My next adventure will be to apply for the Masters of Fine Arts in Creative Writing at Eastern Oregon University over the winter. It will take a minor miracle in financing, since there is only one scholarship for one student and I need to be the one chosen in order to make ends meet. It will also take my childcare supports staying put, which is by no means guaranteed. But by next summer, I hope to be a graduate student who occasionally gets to go hiking.

The morning rays of a new life have come and I’ve taken up the work of rediscovering my own agency. Sure, it’s tenuous and quite different from what I hoped and dreamed thirty years ago. But it has brought me back to the core elements of what my soul needs.

Taking action: With and without empowerment

I’m going to level with you. The last couple of years have been really, really tough. Even if you aren’t very close to me personally, you’ve probably noticed, if you somehow managed to keep reading my blog.

I will say this for myself. I kept posting. But it was rough and I know a lot of my posts have been less than uplifting recently. That’s how it goes when life is throwing heavy crap at you and you’re the honest type.

a hand reaching for an illusive light - Creative commons image by gabriel rojas hruska

But I now have the possibility to come back to writing more than just a blog. And for me that means light is coming back into my life. I can’t guarantee it will stay. My newly stabilized situation is held together by metaphorical spit and duct-tape, but I’ll take any chance I can get.

In fact, I have already resurrected one of my old book-length writing projects, blown the cyber dust off of it and sent it out to a couple of beta readers.

Yikes! That was invigorating! (Along the lines of how jumping into an icy winter lake is invigorating.)

I didn’t previously know either of these beta readers and I got a lot of hot and heavy criticism, which I fully appreciate and intend to use for improvement. My friends are often too nice about this kind of thing.

Friends, I do understand. Not only is it easier to critique a stranger—who you are unlikely to have to comfort through the resulting existential writer’s depression—but most of my friends also share a good deal of my background and worldview. In short, we have a lot of the same assumptions and even prejudices.

The story in question is a memoir about how I got into international journalism as a 20-something and lived and worked in more than 30 countries. And it necessarily (from my perspective) starts with the fact that I grew up in a shack that lacked an indoor toilet in rural eastern Oregon.

I mean, this is essential character development for the rest of the story, isn’t it? If I had been an adventurous young person from a wealthy, back-east family of intellectuals with connections to the newspaper business and high society, the basic events might have been marginally similar, but the story would have been utterly different.

And for that very reason, it appears that I have a great deal of trouble describing my background in a way that is both palatable and believable to people of the middle-to-upper class American persuasion. My critique partners both found these sections baffling and unsatisfying, despite the fact that I actually thought I was being “funny” with self-deprecating humor.

The most basic example from one of the beta readers came in the section where I described meeting a group of American exchange students bound for Germany. We were all around sixteen years of age and all Americans and all white. But my difference in background was obvious.

They were all from wealthy families and from big cities. Their luggage matched. Their clothes matched. They all shared social norms and communication styles that I didn’t. They were also all sighted and I couldn’t see their faces.

But these are not differences our society emphasizes. The exchange agency, my fellow students and my beta readers were all bewildered as to why I didn’t fit in.

When I described the confused and cold reactions of the other students to my presence in the group, one beta reader kept text-yelling “But what was YOUR behavior that led to this?!?” Surely, I had to have been behaving oddly to be excluded by this group of nice, upwardly mobile young people.

And I have to hand it to that beta reader for brutal honesty and attention to detail. From my perspective then as well as while writing thirty years on, I did not see anything remarkable about my behavior. But on closer inspection there was.

I didn’t make eye contact. It is physically impossible for me. I didn’t smile hesitantly when others made eye contact. I didn’t give a little smile of recognition to the person who sat next to me at lunch when we later met in passing. When another student went out of her way to hand me a hard-to-reach book, I thanked her, but I didn’t respond to her with the extra warmth that context would imply when I met her later, BECAUSE I couldn’t see her face and thus didn’t recognize her.

And those are just a few of the vision impairment related “behaviors” I no doubt displayed. Honestly, I was stung by the beta reader’s insistent comments that the issue had to be my behavior. On first reading the comments, I felt sure this was unjust.

I had been kind and friendly to my fellow students. I had greeted them cheerily and continued to do so, even as their attitude toward me soured. I had passed books to others. I had helped a fellow student pick up her things when her hands were full and her purse spilled. I went out of my way to try to ask them about themselves and respond with acceptance and positivity. Shouldn’t that be enough?

Maybe it should. But that is irrelevant to a beta reader. A beta reader looks for the believability and relatability in a text narrative. She does not represent some ideal of justice and fairness. She represents a regular reader who doesn’t know about vision impairments and who also happened to come from a background much more similar to that of those other students than to mine. My perspective is foreign and incomprehensible to her without a great deal of context.

If I want readers like her to be able to believe and empathize with me as a sixteen-year-old trying to win acceptance among a group of exchange students from wealthy and privileged backgrounds, I really do have to show how my behavior was different. I would have to break it down with a lot of words and description.

I’m not necessarily saying I will do that when I edit my story. But I am taking it into account as a factor in how some readers will be able to understand my story on a deep, empathetic level. I may choose to sacrifice some of that for the sake of brevity, but thanks to that beta reader, I’ll do so consciously, rather than obliviously.

This beta reader also expressed that I “should have taken action” to improve my situation at the time. And here context comes up again. How exactly could the visually impaired and socially underrepresented student in this story take action to become less excluded?

I couldn’t magically see other people’s faces. I didn’t even realize at the time that that was a big part of my social problems, so I couldn’t explain it to them in hopes that they’d be understanding. Likewise, I couldn’t magically gain knowledge about the social norms of urban elites. I was also largely unconscious of those issues, as were my fellow students.

Thinking about this has led me to an understanding of how empowerment or lack there of affects an individual’s ability to “take action.”

My second beta reader wondered why I didn’t “take action” to get into the newspaper industry more effectively later in the story. I was doing literally everything in “the book.” The book is Writer’s Market, an annual listing of how and to whom writers can market their work. It’s the outsider’s guide to getting into the publishing and print media industries. Everything an outsider can do—from query letters to conference stalking and from agent hunting to exposure swapping—is in that book. And I did all that.

What I didn’t do was the Hollywood type things. I didn’t get a job as a waitress at the place where a top newspaper editor eats lunch and then strike up a friendship with him. I also didn’t do the realistic things that most people in the business did to get in the door. I didn’t call up my uncle or my uncle’s friend in the business and get an entry level job, because I didn’t have any relatives or friends in the business.

Empowerment makes for action. If you have the basic materials or conditions, action isn’t inevitable but it is feasible. In other words, you still have to work for success, even when you’re privileged, but taking action follows empowerment.

We don’t always realize how empowered we are, of course. Much of my life in rural eastern Oregon today revolves around trying to get rides or set up rides for my kids. After years living in a country with a dense public transportation system, I find this limiting and frustrating. Not being able to drive is a much bigger deal here, and other than the online world, most actions I might want to take to improve my own life or that of my children require transportation in a vehicle.

And yet, I sometimes do find ways around it. I find ways to work with medical transportation services. I network. I offer what I have in exchange.

To modify a phrase, knowledge is often empowerment. Had I known more about social class and vision when I was sixteen, it is possible that I could have navigated groups of teenagers better. Certainly, if I had known the right people or even just the internal structures of newspapers, when I was trying to get into the newspaper business, that would have been a lot easier.

But knowledge still isn’t the same thing as just being in an empowered position. I wouldn’t have needed that knowledge, if I had been part of the in-group already. And I now wouldn’t need detailed knowledge of every type of transportation system, if I could access transportation in the societally supported way—i.e. by driving.

When you look at your own or another person’s situation in terms of whether or not they take action at the right moment, these are key considerations. Are they empowered to take action by the situation, their own limitations or the society they are in? Are they informed?

We often can’t fix these things, but being aware means that we are moving through life consciously, rather than being oblivious.

When they claim it's all about ancient hatred...

When Russia first invaded Ukraine, I spent every spare minute helping a scrappy group of aid workers evacuate Ukrainian refugees from the war. At the same time, I was juggling my intensive work with my kids with special needs, including mountains of paperwork.

A family member would take my kids for an hour or so, and I’d shoot out a message on the encrypted chat saying that I had a few minutes to help. I was immediately sent the coordinates of and basic information about a small group or family of refugees and the border crossing they hoped to get to. My job was to use Ukrainian Cyrillic maps, my knowledge of the region and a steady stream of military reports to plot a safe course for the refugees across hundreds of miles of hot territory.

The situation in war changes minute by minute and while some roads were better than others for a while, there were no actual safe zones. I had to keep up with the incident reports of the war. More than once, I was about to route refugees down a well-used road or over a bridge, only to have it bombed and have to call them back at the last minute.

Creative /Commons image by vasenka photography

It was always a race against time, no matter when I logged on. Once we had foreign drivers headed for a children’s home to evacuate orphaned babies and they couldn’t find the street address in the identified town, because in accordance with Eastern European custom, the address was listed as being in the town, when it was actually in one of the outlying villages. Knowing this, I found it just in time and the drivers were redirected.

Then something started to raise my hackles.

More and more of the people I worked with in the international organization expressed animosity toward Russians. By this I mean toward ordinary people. We always hated Putin and the oligarchs and the military. But increasingly there were vicious jokes and fantasies about killing Russians in informal comments.

At first, I said nothing. They had reason. It was stressful work and they were letting off steam. From what I could tell, the Ukrainians among us would have no part of it. They had more reason, but they were more reticent to start with the talk of hate and killing. Maybe it was too real to them. Eventually, I mentioned that hate wasn’t what we were about, and several of my colleagues became irate.

Didn’t I want the Ukrainians to win? Clearly, the Russians are the aggressors here.

And despite levels of complexity I am aware of in the conflict that some of my colleagues were not, yes, I agreed on general principle.

BUT that doesn’t change the issue. How many times have Americans been the aggressors in a war or invasion? If being a citizen of an aggressor nation made one worthy of death, then I and most of the volunteers would be sentenced too.

And I know well what it is like to disagree with a powerful military machine in one’s own country. When I was involved with international organizations against the US invasion of Iraq, alongside Iraqi dissidents, no one talked about wanting to kill Americans. Thank goodness.

Beyond even that though, I strongly dislike fueling the narrative of hatred in this war. It isn’t good in any war, but in this case, it makes even less sense than usual. I’ve yet to see a war that wasn’t utterly senseless and stupid, but this one takes the cake.

I know some reasons why our Ukrainian colleagues may have been silent that many of the Americans and Europeans in the group might not. One reason is that Ukrainian citizens are about a third Russian and there is no clear dividing line. Families are mixed. Friends are intertwined. No one made much of it until recently.

This has, of course, made the shock and terror of this war even worse for the people most closely effected. In the first days of the war, I noted that many of the refugees speaking to journalists as they crossed into Poland were actually speaking Russian, not Ukrainian. Of course, the fighting was heaviest in the eastern part of Ukraine, where most of the people speak Russian and have strong ties to Russia. In the first days, the war was not just a war of Russia against Ukraine, but also a war of Russian power holders against people they saw as their somewhat disloyal serfs.

Still, there has been some real tension between Ukrainians and Russians for years, though most of that was among the political elites and those involved in nationalist groups. Ordinary people, especially in Eastern Ukraine where the conflict has centered, have been so intermingled that few can say they are one-hundred percent Ukrainian or one-hundred percent Russian.

Twenty years ago, some of my closest friends in Prague were a group of artists from the Ukrainian city of Kharkiv who called themselves the Tender Russian Painters, though their last names—Boyko, Chernenko and so on—named them more as Ukrainian than Russian.

Though Russian was the language they spoke most often, they were eclectic artists, mostly not even painters. They also weren’t particularly tender.

They set up a safe house for refugees from the authoritarian regimes in Russia and Belarus without any official backing and took no crap. I entered their world as a journalist but soon became an honorary member. The safehouse often had its electricity cut for lack of funds and we’d talk by candlelight with groups of dissidents who had to flee their homes due to incredibly minor disagreements with the Russian and Belarusian regimes. I’d bring a giant pot of potato and cabbage soup and listen to their stories.

None of these people ever made much of their various ethnicities. Ukrainian, Russian, Rusyn and Belarusian flew around in a swirl of eastern Slavic words that I certainly couldn’t untangle as the lone American in the bunch. Soon they adopted a German and a Nepali migrant worker as well. There was little room in that atmosphere for nationalism or ideology.

Later, when I worked in Ukraine there were ethnic tensions only among fringe elements of society. Most Ukrainians and Russians in eastern Ukraine had plenty of both in their family trees.

When issues did crop up, they were more political than ethnic. There were those who were nationalist and wanted monolithic state languages to stand undiluted. There were also more liberal or cosmopolitan opinions, not just among smaller minority groups but among both Russians and Ukrainians as well.

Recently, reports in the news have revealed the activities of both Russian and Ukrainian extremist and paramilitary groups—precisely the type of rogue combatants who were responsible for the most heinous atrocities in the Balkan wars.

The development of such groups was inevitable, I suppose, even given the scarcity of actual neighborly hatred between ordinary Russians and Ukrainians. A population can only take so much war before some elements crack and become vicious.

Now there are pundits on the region who mutter about “ancient ethnic hatreds.” That’s what they said about Bosnia, Kosovo and Macedonia too. But when I went and walked the streets with the people in those places, I found bewilderment more often than extremism.

“We were neighbors! We were friends.”

“We worked at the same factory. We went to the same school.”

“I didn’t even know what side I was supposed to belong to.”

That is the reality for the people in the towns and villages of eastern Ukraine as well. Yes, there were Russian activists and hot heads who took money from Putin’s stooges to stir up controversy and make an appearance of widespread grievances among the Russian minority. But the actual concern for locals was limited to wanting to use their native language at school or wanting more investment from the Ukrainian capital, not less.

And on the other side, yes, many Ukrainians felt the oppressive weight of Russia as a foreign superpower glowering over them for years. That was why many Ukrainians voted for measures to require that all citizens of the country learn Ukrainian as well as any minority language they might speak. But that was about as far as the tensions went for most people.

Both Russia and the US meddled in this. Russian interests funded Russian nationalist groups and the US funded Ukrainian nationalist groups, including most unfortunately some with ties to neo-Nazi associations. Both superpowers attempted to interfere in Ukrainian elections for at least twenty years.

The fact is that Russia felt the diminishing of its national power and influence as Ukraine became a separate country, and the US wanted anti-Russian sentiment in Ukraine to increase for geo-political purposes. The extremist groups were the only ones either major power could get to raise their concerns locally.

The fact that I point out these uncomfortable issues does not make me an apologist for Russian aggression. There is no excuse for the kind of illegal and idiotic imperialism that Putin and the Russian military have unleashed on Ukraine. Ukrainians have a right to self-determination. Even if US involvement was, in this case, less brutal and bloody, it was also an infringement of that right, which then handed Putin an unfortunate propaganda bludgeon in this war.

The fact remains that this is not a war based on “ethnic hatred.” Most Ukrainians and most Russians have been dragged into the conflict kicking and screaming. This is instead a war of geo-politics.

But wars do create hatred and deeply held enmity. These militarized nationalist groups won’t disappear even if a ceasefire is signed or certain powerful leaders die or undergo regime change. Both governments are likely to deny responsibility for ongoing violence by the paramilitaries they created.

Why does this matter now? Why discuss it if there is nothing we can do?

Because talk of hatred will inevitably lead to a withdrawal of empathy, not just for those we see as the enemy but even for those we think of as the victims. When we in countries that have not recently fought a war at home dismiss the conflicts of others as the product of some implacable “ancient ethnic hatred,” we tell ourselves that this is something that happens only in such barbaric places and we set ourselves apart from the kind of backward people who engage in “ethnic hatred.”

In reality, the US shares responsibility for part of this mess. The US supported extremist groups that have morphed into the kind of paramilitaries that escalate communities toward hatred.

Ordinary Ukrainians and Russians were about as ready to go to war with each other as Oregonians and Idahoans (which if you live in Eastern Oregon, you’ll get that analogy even more explicitly). Yes, there were differences. Yes, some even rallied to secede and join their eastern neighbor. But it was geopolitics that made it erupt in war, not hatred among people.

It is crucial that we do not use such easy explanations to dismiss and distance ourselves from people suffering war on the other side of the world. They are more like us than is comfortable.

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.