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.

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.

The spelling police and the only divide between people that actually. matters

Here’s a surreal one for the annals of social media logs. A heated discussion recently broke out in a Facebook group called Blind Penpals about typos and spelling errors in posts and the ethics of calling people out over them.

I joined this group some years ago as a way to support a social media acquaintance from Macedonia who reached out to me. She’s blind and she started this group to get more social interaction in her life. I didn’t feel the need to ask why she was isolated. Blind and visually impaired people are so often dismissed and forgotten (at best) no matter what country they live in.

The group was only a handful of people and she needed numbers to get it going. I had kids with intense needs and jobs and urban homesteading, the works. I didn’t have enough local community acceptance and still don’t, but I have never lacked for online connections and I didn’t really want a penpal. But I have enjoyed the occasional perspective from other blind and visually impaired people around the world.

Image via PIxabay

Thanks to the handful of Eastern Europeans who jumped in and spurred Facebook algorithms to put the group in search results, it now has 7,300 members. It’s an English-speaking group so most of those are people in the English-speaking, privileged West of the world. And thus the discussion about typos and spelling.

As my readers know, I’m a professional writer, but that doesn’t mean I never make spelling mistakes or typos. Part of this is just that I type fast and often have a kid or two yelling at me while I edit my posts. The other part is a consequence of being visually impaired.

First, I rarely read print. It is laborious, painful and slow for me to read even if the print is large. I have read out loud to my kids for eleven years because a parent reading, both the actual warm body and the warm, imperfect voice, have amazing scientifically demonstrated benefits for children, especially children who spent the first months of their lives in cold institutions without these things. But it’s a labor of love. It’s hard and I wouldn’t do it for anything less vital.

For everything else, I listen—to audiobooks, to podcasts, to text-to-speech articles, to audio descriptions of TV shows, even to voiceover on my phone.

As a result, I don’t see words over and over again like most people in today’s world. I don’t have the reinforcement of spelling and didn’t have it as a child. I routinely encounter words I want to include in a blog post that I am pretty sure I have never seen in print before. When I realize this consciously, I look them up.

But a lot of the time I don’t slow down enough to notice and I spell the way I spell. If the word is a homophone, the spellcheck doesn’t even catch it. And at other times my spelling guesses are so far off I can’t find the correct spelling even if I search online. If you’ve been reading my blogs for a while, you’ll know what I mean.

But social media is much worse than blogs. When I blog, I write in relatively quiet moments and I go through and edit at least two or three times on each post. I post only every two weeks, so I have time to do that.

But social media is an ongoing conversation. It IS my social interaction and it is that for a lot of others during the pandemic and for a lot of people with disabilities even when there isn’t a pandemic. It’s like talking to people. I do it while I’m cooking dinner, fielding kids, digging up the garden, taking a five minute break from a translating job or standing in an elevator to the doctor’s office.

I can’t see much at all on the tiny screen of a phone and I use the accessibility settings to the hilt. I dictate nearly everything into my phone and I play back what I wrote, if there’s time. There often isn’t. When you speak into a speech-recognition app, there are going to be mistakes. I’ve gotten pretty good at using the technology. I know how to enunciate to increase my chances, but errors are still going to come up.

All this applies to most of the other blind and visually impaired people in the Blind Penpals group, except many of them learned English as a second language, have less residual sight than I have, have cheaper technology or have less education. Blind people never were very good with spelling and modern speech recognition technology may have made written communication a lot faster and easier for us but it generally increased the level of errors at the same time. I wasn’t the target of the shaming this time because I was one of the better spellers in the group, but the virtual heckling of others really got under my skin.

Last year, I was harried out of the local branch of Extinction Rebellion in no small part because of my error-ridden dictated messages in the group’s coordination system. No one ever said any of my messages were actually incomprehensible, but I had several major coordinating roles and I had to do a lot of messaging back and forth with volunteers.

I want to make clear here that Extinction Rebellion is an awesome movement and most of the volunteers are the best people in the world, who made me a cake to thank me for being their coordinator and were truly appreciative and cared not one iota about typos.

But there were a few people, particularly a coordinator who came from a more privileged background than most in the group, who couldn’t stand my errors or the way my messages sounded like someone speaking, rather than the clipped abbreviations which she preferred. After months of conflict over this issue and being banned from various activities she was overseeing, I left the group entirely to preserve my health and give my family some much needed TLC.

If I’d been younger, feistier and childless I probably would have stayed and fought for inclusion and maybe saved that XR branch from the disintegration that soon followed my exit. But my kids were in crisis, my health was suffering and the attacks were giving me PTSD flashbacks from much worse social ostracism in my childhood. I chose to heal and live to fight another day. But I did take a lot of lessons with me from that experience.

One of them was that even in the best circles, there are people who snap or peck at other people for reasons that A. don’t really matter and B. are beyond the personal control of the person being attacked. It’s the root of racism, ableism and pretty much all other evil as far as I’ve ever seen.

It isn’t the differences that hurt us. It’s the intolerance of difference.

Even in current American politics, it isn’t the fact that people disagree about the best ways to counter a pandemic. It’s the hatred of those who have different opinions that is breaking families, friendships and efforts to protect the vulnerable.

Willful endangerment by hugging people in large gatherings and refusing to wear a mask in crowded places isn’t about an opinion. It’s about denigrating and antagonizing those who have different circumstances and greater concern. On the other side of the political divide, shunning and shaming anyone who asks questions or mentions new information is another manifestation of the “us versus them” paradigm..

I don’t always enter the fray on social media. After I was hounded out of the local Extinction Rebellion group, I took a nine-month break from social media and had a lot fewer arguments in general. But I also became a lot more isolated. So, I’m back now and I pick my battles, but I do choose to occasionally stand up to those pouring shame on someone while they’re down.

The recent spat over typos and spelling errors on Blind Penpals was one such instance. There were several male members with English-sounding names who repeatedly posted about the high level of English grammar and spelling in mistakes in the group. They were from what I could access on their profiles all coming from fairly privileged situations. I don’t know whether they were actually blind and visually impaired as well, but they were westerners, native English speakers, and mostly men. Their style of posting showed that they had a lot of time to devote to social media and they didn’t have a lot of survival-level pressures in their lives.

I posted a brief reply on the first post informing the person offended by the errors that many in the group are non-native English speakers, and because it is a group of blind people, many also use imperfect voice recognition technology. I fully expected that to be the end of the discussion. Instead several others piled on and there were more posts harassing and shaming members whose posts were not perfect.

What I came to in the end of that discussion is worth repeating:

“The issue is not that person A has an opinion and person B has an opinion and they are different. The issue is that person A has an opinion denigrating person B and feels empowered to share it widely and publicly and person B wants to be left alone and not harassed. It is time the world woke up to this thing.

I don’t care if your opinion is different from mine as long as your opinion has no bearing on anyone but yourself. If you are troubled by someone’s imperfect typing or dictating, someone’s skin color, someone’s accent, someone’s religion, someone’s sexual orientation, someone’s gender identity or lack there of, someone’s disability or body shape, go cry into a pillow.

Expressing a negative opinion about other people is pretty much the root of all the evil in the world. There are acts of nature that hurt us, but they aren’t evil. Even Covid is just a life form, living and procreating. Evil comes in when a thinking entity denigrates another, not in defense, but just because the other makes them feel uncomfortable or requires them to exercise patience, tolerance or self-discipline.

The old saying is true after all. There are only two kinds of people in the world. There is one important divide and that is between people who attack others simply for being different, uncomfortable or inconvenient or allow others to do so without challenge and people who defend against such attacks and insist on inclusion. It’s the only divide that actually matters.”

I know typos actually do sometimes cause confusion or real problems. I also know some people really want to learn to use language better. I have spent the past fifteen years teaching writing craft and English as a second language. I spend all day essentially criticizing other people’s grammar or writing and helping them make it better.

But they asked me to do it and I never shame them. I have students who make the same mistake literally hundreds of times. But they are all doing the best they can. Bad grammar or bad spelling is never simply a matter of laziness. It is often a matter of being too stressed, rushing to much, difficulty focusing and all kinds of other things.

The problems that matter are the problems caused denigrating a person or a group of people. In this world, just about everything boils down to that.

The catch is that we aren't all permanently on one side or the other of that divide. I am dismayed when people I respect fall into the trap of shaming others or judging others without having all the information. It is crucial to keep this divide in mind. It doesn’t mean never criticizing. But it does mean paying attention to whether or not the person criticized had a real choice in their situation. And it means regularly checking your own confirmation bias.

Hair, identity, ageism and a pinch of joy

My mother tells me that she cut my long, wispy, ultra-tangly, white-blonde hair when I was five years old. Being a highly-opinionated and strong-willed child, I apparently screamed at her in a rage. She never did that again.

Eventually, I let her trim the split ends off of my wild mop of hair as a teenager, but I was highly sensitive to how much it was cut. I’m not sure where exactly I got this relationship to my hair.

I think part of it came from my family’s counterculture identity, which I clung to desperately. I was viciously rejected by kids in the small-town school I attended, because of my strange, wiggly, near-sighted eyes and my inability to adopt the subservient, non-centered role that might have won me pity rather than aggression. One of my reactions to that was to brandish my family’s counterculture identity like a shield, possibly as a way to beg the question: Was I really rejected because of something individual to me or was it a consequence of the clash of tribes?

This is me at a hippie-gathering c. 1979

And hair was part of that clash. The men in our family didn’t cut their hair when I was little as a statement of rebellion. My father and older brother both had long, lustrous locks, both thicker and much more easily brushed than mine. My father’s was a a rich, sun-streaked oak brown. My brother’s was golden as a cherub’s. My much thinner, flimsier and frizzier hair was bleached so nearly white that doctors speculated that my vision problems might be related to albinism, though I wasn’t a real albino.

The issue of girls’ hair was not nearly as culturally sensitive. Some girls in our circle did have short hair, often shorter than the boys. But somehow it stuck in my mind that long hair was part of family and clan unity, something I desperately needed.

That is why I had very long, very light hair as a young adult, a feature that stood out wherever I went, and particularly when I traveled in places where black hair was in the majority. It was, in fact, an ice breaker that gained me friendly hospitality in far flung places on more than one occasion.

One of my favorite memories is when I sat on the edge of a massive cliff in front of a Nepali village in the morning to brush my hair and thus attracted a gaggle of young women, who gathered around me with their own brushes and combed one another’s hair and my hair while the sun came up over the Himalayas in a dazzle of warm pastels.

By then, I knew that I had been right as a child. My long hair was an asset that I should never cut. It was finicky and difficult though. Brushing it was often a chore and washing it with the standard, commercial shampoos and conditioners I could afford was a recipe for pain, frustration and a lot of breakage.

I certainly never dyed it. Not only was its color firmly engrained in my identity as well, I was also afraid of what the harsh chemicals in hair dye would do to my already fragile and precarious hair.

Over the years, my white-blonde hair turned a bit darker, with dirty-looking streaks underneath. Sunlight still bleached the upper layer and no matter what hairstyle I tried, it always frizzed out around my face, making me look a bit like a mad scientist and acquiring terrible tangles. It looked best when left down in long, flowing locks, but given how fine and fly-away it was, the slightest breeze or any movement on my part resulted in a tangle that would take an hour or more to brush and leave me with fist-fulls of broken hair that progressively thinned what I had.

Eventually, I discovered through trial and error that the only brush that will handle my hair both gently and thoroughly is an afro pick. White people usually don’t know what exactly these are supposed to be for, so they just assume that’s what I like. Black people tend to give me confused (or sometimes amused) looks. My hair is about as different from African hair as it is possible to get, but that’s simply the only thing that works well.

Finally, in my late thirties my hair started going gray. As with the dark streaks it didn’t go gray in any decent way, just in unsightly patches. One year, I thought my hair was all going to fall out because even with the picks and expensive hair products, I ended up with ever larger fistfuls of fallen and broken hair when I brushed.

And that was around the time when I noticed that strangers started treating me differently. I’ve always gotten some strange looks from people on the street, especially if I don’t carry a white cane as explanation for my strange-looking eyes and my occasional odd way of walking or peering at objects. But this change was different.

When I was younger, everyone from officials to shop-keepers usually defaulted to kindness toward me, often condescendingly so, if they realized I was mostly blind. Still, in a wide variety of cultures, I had generally positive experiences with people I had never met before once I was out of the bullying ring of school. The issue of being actual friends with a blind person was always a different matter, but interactions were pleasant enough when they remained on an anonymous surface level.

Here’s my hair while I’m teaching ESL classes in a remote mountain cabin in the Czech Republic in 2016

That started to change in my late thirties. People in positions of authority are less likely to have mercy on me. Random strangers are less likely to stop and answer kindly if I ask for directions. Shop assistants are less likely to willingly help me. It feels as if I somehow lost a bit of my white privilege. That has made me wonder if I used to pass as abled a lot more than I thought. Maybe it is perceived abled privilege I lost. But I also see another possibility.

I think it’s ageism. The changes correlated exactly with the graying of my hair and the roughening of my face. And it tends to be a lot worse when I am not wearing a hat. So, there’s that.

Last year, when I was part of climate change protests and we had several of our own photographers taking thousands of pictures, I noted that although the core group was only about thirty people of which I was one of the most active, there was not one picture that showed my face in our database after several months. Every other person in the group was pictured many times.

Most of the people in the group were young. This is climate activism after all. But the few older men were seen in pictures. And two other women over forty were also in pictures, though not very often. Their hair was dyed and you couldn’t readily see their age.

But I was invisible. I was too busy to notice for many months until I was browsing the photo archives for an article, and the complete lack was striking enough to stand out.

That’s what I’ve been told happens to older women. After a certain age, you disappear.

I have never been very vain or hung up on appearances in general. My mother also says that when I was fourteen I told her I couldn’t believe people actually cared that much about visual first impressions. Since I couldn’t see such things and objective measures show first impressions to be misleading, I couldn’t imagine how it could be that important.

I did dress up for job interviews and wear professional clothing to work, but I saw this as more of a uniform than a ploy to make good first impressions. It was my positive attitude, skills and intellect I counted on to get me through doors. And for awhile, that worked.

I was fortunate enough to have a face that more fashion-conscious women told me didn’t desperately need makeup. I was young and healthy. and I did have that striking hair. So, until I started to age, doors were generally open to me.

That was another thing that closed down hard and fast in my mid-thirties. I can get tutoring jobs. I guess teachers are allowed to look old. I can get the occasional online writing gig where the image of my face is never considered. But I can’t get any other kind of job no matter how well my qualifications fit.

And networking to get ahead… Not a chance. That’s all about first impressions. I know that now.

Picking black berries in autumn color

A few years back I acquired a tutoring student who is a country manager at a major hair-care company. And she often commented on options for my hair and brought me samples of the company’s products. These helped to slow the shedding and breakage of my hair. And she introduced me to the idea of using natural henna and other herbs to dye my hair.

At first, the whole idea of dying my hair was disturbing. The color was almost as much a part of my identity. as the length. But somewhere, deep down, I had always had a desire for red hair, since the days when my idol was the cartoon of the Strawberry Shortcake doll and my primary imaginary friend in looked like her.

Then there was my long love-affair with Anne of Green Gables as a.teen in a household that only got educational television. One way or another, in my generation blonde was sort of considered “desirable” but at the same time blondes were ridiculed. Red-heads seemed to be somehow outside the rules of fashion and usually both strong and independent.

And of course, the main shade henna does is red.

But the hair-care manager insisted that this kind of natural hair dying could only be done at a salon with complicated methods and equipment. That was a step too far. Even if it weren’t an extravagant expense, I’m a DYI kind of girl. So, I still hesitated—until a red-headed friend from the Bohemian highlands told me that she colors the gray spots in her own hair with henna and that it is possible to do alone.

So, finally I found a source of a completely herbal hair dye and tried it. The first shade I used barely gave my hair a gold tint. So, I went for one that promised a much darker red than I initially wanted. The result was perfect, just the shade of strawberry blonde I had always wanted.

Here’s my new look.

I dyed my hair one sunny early autumn day when I was at home alone and waited to see what my husband would say about it. He was actually struck speechless for a moment and then showed uncertainty and concern. Had I done something rash again that would have negative social consequences? My son was equally disconcerted.

Finally, I found a few people online who liked my new color, but the response wasn’t unanimous, except from my ESL class of older women. They were all enthusiastic and their delight looked genuine enough.

But the thing that really let me know it is a good thing is that I can’t help smiling every time I catch a glimpse of myself in the mirror. I haven’t enjoyed looking at myself at all in years, and I don’t think I ever actually felt good about my appearance. In some ways that’s enough for me.

So, I’ve learned that appearances do matter much more than reason dictates. I’ve found out what happens when people just don’t like the look of someone and what happens when a woman crosses the boundary into looking old.

I don’t like it and I see the dismissal of older women as a key component of our society’s patriarchal disease, but I have also accepted that it is our current reality. And I’ve realized a long-held, somewhat frivolous wish.

Am I buying in to the patriarchy by coloring my hair and hiding my gray? Some may think so. It causes me a twinge, but the joy I feel at having this one little bit of vanity for the first time outweighs it. I would have felt the same joy even if my hair wasn’t gray, but I didn’t know about or have access to a healthy hair dye in those years.

I hope you are likewise able to fulfill a wish every now and then (even one that is important to your heart). Fulfilling a wish beyond that necessary for survival gives joy in this time of Covid-19. Use these changes, whatever they may be in your circumstances to try something you always wanted to.

Keep your convictions strong. Keep openness and care for those who are cast out. After all, we are the ones who become the change..

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.