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.

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.

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

Dear Trevor Noah,

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

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

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

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

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

“You’re going THERE to escape racism?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A world designed for people like me

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Getting around

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

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

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

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

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

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

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

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

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

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

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

Social norms

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

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

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

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

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

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

Public services and commerce

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

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

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

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

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

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

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

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

Technology, entertainment and work environments

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

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

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

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

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

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

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

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

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

A few more details just for me

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

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

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

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

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

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

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

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

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

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

Final thoughts

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

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

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

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

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

Who's racist or ableist: the Implicit Association Test

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

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

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

Creative Commons image by Whisperer in the Shaddows photostream

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What changed? Both life experience and conscious focus.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To take no shit or to tough it out - a rebel's view

I’m going to write about an incident here that I have never openly acknowledged before. I didn’t promise to never discuss it. There was no non-disclosure agreement, but I’m sure my high school principal assumed there was a gentlemen's hush-hush agreement.

He should have known. I’m no gentleman. Part of the point was that I’m not a man at all and was not a boy.

Creative Commons image by Craig Cloutier

I graduated from high school in a desert town so small that they changed the population sign when my family moved in from 150 to 154. My father was a rookie teacher and had to take whatever post came his way. The sophomore class I entered had six students. I got a study-abroad scholarship and spent my junior year in Germany, but I spent two years with them.

By the time I was ready to graduate I was also more than ready to get out of that tiny desert town. I had again lined up scholarships, this time to an exclusive, liberal arts school half a continent away. I had big dreams of international journalism—and more importantly—escape.

My grades and SAT scores were enough to land the scholarships. The other kids mentioned something about me being valedictorian and I was surprised we would have one with so few of us. Even so, I wasn’t without competition.

My study-buddy Faye, who was one of the best friends I had during my entire school career, was college-bound and savvier than me about most things outside of books as well. She would no doubt have had straight As, if her home life had been more like mine—i.e. stable, two-parents, and you know, a house with separate rooms for each kid rather than a tiny trailer.

But as it was, she wasn’t even in second place. I won’t pick on the kid who was by name because I doubt any of this was his fault, though his parents might have been involved.

In the early spring of my senior year, I was called into the principal’s office and told that I wasn’t going to graduate. I already had a college settled and full scholarships. The news hit me so hard it literally knocked the breath out of me. The principal said that, although the school had initially agreed that my credits from Germany would be accepted without any grades being counted against my GPA, he had determined that that wouldn’t be possible.

He gave me two choices. I could either repeat my junior year to make up the credits or take the grades given on my German report card into my GPA and accept that “pass” grades, of which there were several would be counted as Cs.

I had even gotten a real C on that report card—in third-year chemistry. I had never taken first- or second-year chemistry and it was in German. The teacher was a sour-faced traditionalist who probably was being “charitable” by her standards in giving me that C. I couldn’t follow the class at all and there were no accommodations for the fact that being legally blind I couldn’t see the chalkboards or read the tiny-print, light-blue-ink books.

If I accepted those grades I wouldn’t be going to college at all, given that my scholarships would evaporate. There was no way I could work my way through school without being able to drive or do the hurried physical labor of most minimum-wage jobs at fast-food restaurants. The principal maintained a level, uninterested tone as he delivered this soul-destroying ultimatum.

I went home in tears and was confused by my parents’ strange lack of concern.

Most of what they said was a blur to me, but I remember my mother at one point stating, “You need to stop grabbing everything for yourself.” Finally, I got what she meant. My mother was always fanaticly against selfishness and at one point she hinted that it was understandable and even justifiable for the town to want the son of a prominent local rancher to be valedictorian, rather than an interloper who had only been there for two years.

But it was my father who explained it to me plainly. I would not be allowed to graduate as valedictorian. It wasn’t actually impossible for me to graduate with a good GPA, but no one could say out loud that the issue was who would be valedictorian in our class of six. However, my father also didn’t seem to think that taking another year of high school would be such a bad thing, even if I had already taken every class the school offered and more than half of my senior year had been independent study and distance learning classes.

I was an emotional and loud-mouthed teen and I cried bitterly over it. I wanted more than anything to lash out, to go into the school yelling and demand justice. I wanted to talk to the other girls and tell all. This was what my parents made me understand I must not do. If I made any kind of fuss, I really would not graduate or would graduate with a GPA that would erase my scholarships.

It was my first major lesson in bowing my. head to injustice and keeping silent, and I think my parents thought it was a good and needful lesson in general, because I had given them a lot of mouth over the years and had a reputation for yelling, “It’s not fair!” at the slightest provocation.

They didn’t tell me exactly what to do or say, but I was actually a quick learner. Figuring out what to do wasn’t the hard part. It was swallowing the bile in my throat that was tough. I didn’t need the accolade of being valedictorian. That wasn’t really the issue.

I was a teenager and so at least somewhat selfish, but I think if someone had come to me and said, “Hey, you have your college thing worked out. Can we let one of the other kids have this valedictorian thing so that they have a fighting chance?” I would have given it up willingly. I just hated being scared out of my wits during that terrible moment in the principal’s office and bucked at being forced by authority to bow to something blatantly unjust.

Still I managed it. I walked back into the principal’s office a few days later, folded my hands in my lap and tried to put on a show of being a sweet and submissive young girl.

“I see that some misunderstanding has come up here, and I think we can solve it easily,” I said. “When I went to Germany, I agreed with the school that my grades would be counted as pass/fail, and clearly pass/fail grades can’t be counted toward someone being valedictorian. Having those pass/fail credits obviously makes me ineligible to be valedictorian, even if they don’t change my GPA.”

The principal was silent for a moment and then nodded and made a gruff sound of assent. It was settled and not a word was ever spoken about the matter again. I graduated with a 4.0 GPA and went off to college. I don’t know what happened to the kid who was valedictorian, but Faye, who wasn’t, became a lawyer for labor unions and did just fine.

A few more times in my life, I have had to formally bow to injustice. Once I was told explicitly by a hiring editor at a newspaper that I wouldn’t be hired because of my disability. I could have spent the best years of my journalism career finding a lawyer willing to gamble and suing the guy, and I might have won. But instead, I swallowed the bitter pill and went my own way.

Another time an editor insisted on switching the sequence of events in a news article I had written. I wrote that the NATO-led bombing of Kosovo in 1999 preceded the flood of Albanian refugees leaving the province, and showed that the newspaper’s own archives backed me up. But my editor stated that it was “policy” to say that the NATO-led bombing came only “in response to” the flood of Albanian refugees, “forced to flee” the province.

It was the clearest instance of political censorship I encountered as a journalist and I felt a bit like Winston in the book 1984, when he held incontrovertible evidence of vast lies in his hand for a brief moment. But I was a rookie reporter, scarcely more than a kid, and I was beyond grateful to have the relationship I had with that editor.

The bit of backbone I showed that time was to request that no false statement should appear under my name. I asked the editor to either remove my name from the article or allow me to rephrase that part vaguely enough to skirt the issue. We agreed on the latter solution.

Why am I digging all these skeletons out of my closet at this point? Mostly because I had pretty much forgotten about those incidents and when reminded of them, I realized that no one involved in any of those incidents has any power over me any more. I can say these things and any sanctions that might be brought against me can no longer harm me.

The same can’t be said for the situation I found myself in last fall with the climate action movement Extinction Rebellion. There, I was asked to keep silent about abuses of power and to accept being the only person explicitly excluded from leadership positions because our leader took a dislike to my questions and inability to swallow hypocrisy.

The stakes for me were emotional and social this time instead of the future of my education or my job. That’s a blessing of sorts. While the climate crisis threatens all of our survival, this exclusion and discrimination didn’t threaten my personal survival. It only threatened to cut me off from friends and a source of hope that the movement had become to me and many others.

Finally, the stress of being constantly blocked and excluded by those in powerful positions along with the demand of the organization to keep such issues quiet became too much. The impact on my emotions, physical health and even family life was getting out of control and after a particularly rough period of two weeks of daily harassment by one person assigned by the power clique to hound me, I did what they wanted and simply ceased all contact with the local Extinction Rebellion group.

I still text with friends inside the climate action movement and my friends have asked me to come to talks with the leadership. I understand why my friends ask it. I was a powerhouse of positive energy when I was part of the movement and my work involved supporting others rather than the power games that have poisoned our corner of this otherwise admirable movement. My friends who are committed both to real climate action and to a healthy internal culture in the movement want me back.

But those who excluded me have their own reasons for holding the talks. I was far from the only one to run afoul of them and they are understandably under fire for their unethical tactics in an organization that claims to be both supremely inclusive and non-hierarchical. I was one of the more prominent people to run into trouble, however.

The small group being paid “expense assistance” to run the “all-volunteer” organization would like to erase the stain on their reputations (and possibly even their consciences) caused by them hounding the only significantly disabled leader out of our national branch.

This is a current crisis and again I am being asked to bow to injustice and keep silence about it. The last agreement they pressured me to accept was that I would be considered blameless (since there wasn’t anything they could find to accuse me of) and yet I would be excluded from positions of authority. In exchange, I would not be openly harassed and the big autumn actions we had planned would not be disrupted.

As it happened, I was still harassed. And the exclusion was much more widespread than the agreement hinted.

What will their next “agreement” offer? I can’t really imagine. I think I will go to the talks for the sake of the friends who have asked me,, but I will make clear from the outset that I will no longer bend and bow to hypocrisy and exclusion. I will speak openly about harassment and abuse of power. And if I am excluded and harassed personally, I will simply leave.

I am glad that I am no longer a child or a young employee physically under the power of others. The ability to vote with one’s feet without being destroyed is the very definition of empowerment.