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.

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.

There was a girl who didn't fall down

There was a scrawny girl with legs and arms too long for the rest of her. And those were crooked, the bones curved wrongly. Her face was almost all toothy grin and huge thick glasses.

When I catch a glimpse of her in an old picture my mind reels. That was me. I know it was but I can hardly relate anymore.

I was beyond gawky and awkward at thirteen. I had terrible posture from being nearly blind and constantly leaning forward to see things. I looked disabled and I was almost entirely socially isolated. Self-esteem wasn’t even a concept. I was in survival mode. Nothing beyond that mattered much.

Creative Commons image by Sheila Kaye Matthews

But then there was that one day when a summer camp counselor from the Blind School took me and a few other kids out to the Columbia River where the state Special Olympics water-skiing team was training. They figured, since they had the equipment out there, they would give us the chance to just try it out.

I can still remember how they made us stand on the grass and hold our hands out in front of us with a stick. We bent our knees while one of the adults gently tugged at the stick in our hands, trying utterly futilely to give blind children an inkling of what it would feel like to water ski.

We could hear the noise the boats made and distant shouting. A few of us could see the very beginning, when a skier sitting in the water rose up and seemed to stand on the surface for a second before disappearing beyond our extremely limited visual range. Our concept of water skiing was very shaky.

“The water will push at your feet.” The instructor put his hand on my feet and then on my knees. “You have to bend your knees and lean back against it.” He put a hand at the small of my back and coaxed me to lean back. All I knew was that if I leaned back that far, I’d fall over.

“You will fall down the first time and probably lots of times,” they told us. “It’s not about staying up. It’s about getting up and trying again.”

Adults who teach blind children love cliches.

I thought about all that water. I could sort-of snow ski, so I knew how skis worked. In theory, I guessed that the skis could push against the water if I was pulled forward by the boat, and somehow I’d ski up out of the water and stand on the surface. And then I’d lean back, like they said. It just wasn’t conceivable.

“Don’t worry,” the gentle lady from the Blind School consoled me, patting my shoulder as we walked toward the river, “If it is too hard or anything, you just let go. You’ll fall right into the water like jumping off the diving board. No big deal.”

I realized when she touched me that I was shivering all over. My whole body was buzzing with a fine unconscious vibration, like the hood of a souped-up car..

I waited behind several other kids. Each one in turn stood in the water near the shore while the instructors put on their water skis and then handed them the stick at the end of the tow line. One instructor near the shore would count down and the boat’s engine would rev and then the tow line leaped forward.

Half of the time, the blind kids just let go of the stick and never even fell down. The other half of the time, the tow rope pulled them a few feet forward and they splashed head-first into the river. I tried to make out the scene but all I could get was a general impression as the instructors pleaded with the three kids in front of me not to let go of the stick the instant it jerked forward. Two of them let go anyway and the third splashed into the river.

Finally, it was my turn. The water was cold and my shivering got so bad that I thought I couldn’t possibly hang on. The instructor put my skis on and held my knocking knees for a second. I comforted myself that even if I couldn’t keep a hold of the stick, at least the first pull would show me what it felt like. They said we could try again, if we wanted.

I leaned back as far as I could and felt the skis. I gripped the stick with all my strength. I was determined that at least I would be one of those to fall in the water, not just lose the stick.

“One. Two. Three.” The boat engine revved.

The stick jerked hard and I almost lost it. My body lurched forward and I was sure I’d be in the water face first, but then the skis moved. I crouched low, the way I did on snow skis on a steep slope and I felt the slope rise under the skis.

The rope pulled hard at my hands. My knees knocked and I almost went down as the skis broke the surface of the water and the line jerked even harder. I heard a faint yell go up from the people on the shore behind me.

And then a miracle happened. The water buzzed away under my skis. I slowly stood out of my painful crouch and leaned back into the feel of support from the tow line.

“You OK?” A hoarse yell came from the boat. The shore was long gone.

I gritted my teeth and nodded hard. I was glad for the ability I knew sighted people had to see my nod without my having to unclench my teeth to yell back. I was so cold from the wind that my knees and elbows were still shaking but I was OK.

I felt the way the water was like springy, unstable ground beneath me. I felt the secure tug of the line. The boat slowly eased on a little more speed and the water felt harder under my feet.

I experimented gently rocking from side to side. I tried to dig in one side of a ski the way you do in the snow and almost fell. I lurched forward and then to one side and the boat engine sputtered and nearly cut out when whoever was watching me saw what I had done. But I regained my balance and kept going.

That first time up actually seemed to take forever. Mostly other than the thrill, all I remember is how incredibly cold I was. Finally when I didn’t think my muscles could take another second and I was shaking so hard that it must have been visible from the boat, the motor slowed and stopped in the river. I sank into the water, which felt as warm as a bath after all that cold wind.

The boat circled around and came in close so that I could take off the skis and climb up onto the back of the boat.

I barely heard what the people on the boat said, except for one thing they kept saying, “Two miles.”

I thought it had felt long but that long? I was a rural kid and I regularly walked two miles to reach a friend’s house. That was a good distance.

They took me back to shore and I got to warm up while I waited for the other kids to try again. I was worried that they wouldn’t give me many other chances because after all, I had really had a good ski, while the other kids had just fallen in the water, but within a couple of hours, I got to try again and then again. A lot of the other kids wouldn’t do it after the first few tries.

A few did get up on the skis but clearly I was different. I had never been athletic before and the whole thing confused me. I wasn’t special. Not in anything but academics at least. I was a good student but hopeless in social or physical realms, a complete social outcast and a stereotypical nerd, other than being female and growing up rural with physical chores that made for a bit of unskilled muscle.

Once a couple of the instructors came over to me while I was getting the life jacket on again for another try. One of them seemed to be showing the other one my legs. I don’t remember the exact words but apparently they theorized that the crooked, curved bones in my legs that made me run in a grotesquely flailing and inefficient manner, might have by chance given me a water-skiing advantage.

I spent not just that day but the entire week on the water and I was allowed to water ski just about as much as I could stomach. I learned to cross wakes and ski through obstacle courses. I got to go as fast as I could handle and face fear. I couldn’t recognize anyone’s face because I couldn’t see and the noise of boats made it so I usually couldn’t hear what anyone said either. I was almost entirely cut off from the human world during that time, but I didn’t really care.

It was all physical—the water, the sunshine, the cold wind, the pull of the line, my aching muscles the slap of impact when I did fall, which I did a lot once I started crossing wakes…

It was more fun than I could ever remember having and the only bad part was contemplating the end of the week and my return home to chores, boring schoolwork and mean kids at school who ostracized me.

But then at the end of the week, several adults came to me and said I could join the Oregon state women’s team and go to the National Special Olympics water-skiing competition in Florida. There was even a picture of me in the local newspaper, goofy grin and huge glasses behind a water ski dramatically posed for the camera, but the clipping was lost somewhere in the past thirty years.

I went too. It wasn’t as much fun as that week on the Columbia. There was a lot of waiting around and when I finally got to compete, the place and the skis and everything was unfamiliar and I didn’t do very well.

But that didn’t really matter.

I told myself none of it really mattered. it was “only” the Special Olympics after all. I didn’t even tell my friends at home much beyond that I got to go water-skiing. No one made a big deal about it. I got third place in some category or other but I didn’t feel like I’d won.

That wasn’t the point. The point was that engagement with the physical, that sense of being one with my body, of being physically strong and worthy.

Today when I hear about the Special Olympics facing funding threats or I hear people use the Special Olympics as a slur or a joke, I can’t help but think on that. I did other Special Olympics things as a kid. I ran track and field in the local competitions. I didn’t really like it and I didn’t win with my flailing legs, but it was good exercise. I did know how to push myself. That was good too.

But I know those two weeks of water-skiing—one on the Columbia and one in Florida—changed my entire self-concept as a teenager. I went from just surviving and fighting everyone and everything because I was rejected and wrong and hurt to nursing a ferocious desire to “show them all.”

I’m not saying the second impulse was even healthy. I was driven for the next twelve years to succeed academically and professionally. I competed for and got a scholarship to study abroad when I was sixteen. I competed for and got scholarships to go to a prestigious private college. I competed for and got a coveted place as an international stringer for a national newspaper and became a journalist in the Balkans and Eastern Europe. I traveled through more than 30 countries.

Did it start with that miraculous moment when I didn’t fall down, despite all the predictions? Time-wise, yes. It coincided with the sea change.

Psychologically it is hard to say. But I’ll stand by the Special Olympics. I’ll do whatever I can to make sure it goes on, because I think it did play a role and does play a role with a lot of kids who are beaten down and at the bottom of despair. It’s one way to rise out of that.

Note to younger self

If you could send a message back in time, what would you tell yourself as a child being bullied?

I was recently asked this question as an intellectual exercise, but I had to wonder at the deeper reasons for the question. Is there something we can learn from adult memories of bullying or retrospective advice that might provide some practical help for those in similar circumstances today.?

My experience is only mine. It is particular and specific, possibly too specific to be applicable to others. But I do know this. There are things I did not hear from adults or peers that would have helped and some things I heard a whisper of but not enough. I know there are ideas that would have helped because I eventually found these ideas myself and they helped a great deal.

But I had to invent this wheel and the chariot that rode on it. No one gave ,me the pieces. It is possible, of course, that someone tried and I didn’t listen. Or that I wouldn’t have understood these things as a child, even if someone had told me. But I don’t think so. I think these words would have helped.

So for what its worth and in case someone out there must give advice to a child facing pervasive bullying or social ostracism, here is what would have helped me: .

Yeah, the kid in red and black with unmatched socks looking hopefully toward all the kids in pastel colors, that’s me in first grade.

1. It is not you. It is them.

2. It is not you. It is them.

3. It is not you. It is them.

4. Even if there is something you could do to make them bully and ostracize you less, it would only be less. You didn’t do something to “bring it on yourself.” Adults who say that want to believe it because they don’t want to believe kids will really do this to a disabled child for no good reason. It makes them really uncomfortable about the state of the world and the nature of humanity. And they don’t want to take responsibility for making ethics education a major priority. It is not your fault. You don’t have to figure out how to be more perfect. They are the problem.

5. “Social skills” are good. You should pay attention to well-meaning adults who try to tell you how to respond in ways that will help you. BUT those adults do not know what it is like. The social skills are a band aid to an epidemic. They are not worthless but your social skills are pretty average. You can figure out how to be a little more perfect, and maybe that will help. It will definitely help you win in job interviews someday. But it is still not your fault. It is them.

6. You are being bullied and ostracized because your eyes look different, because you are physically different and because of your family background. None of those things are actually bad about you. You are not the problem. The problem is in the minds of other people, in how they were brought up to be judgmental and bigoted and in the kind of society we have. It is not you. It’s them.

7. All the constant hype about how the most important thing in life and happiness is your friends, their number and their fun-ness, is wrong. People are only saying this to help kids who don’t get good grades feel that they aren’t a failure. There are plenty of ways to be happy without a bunch of friends. Find fun by yourself and with one or two friends. Being alone is not shameful or a failure. It can be lots of fun.

8. You are inherently an introvert. Even if you didn’t have a disability and you looked just like everyone else and you came from a typical family, you wouldn’t be the life of the party or the center of a crowd of friends. Some people get their energy from being with people. Some people get their energy from being alone. You will have fun with people but you need to be alone a lot. Being alone is not shameful or sign of a failure. Being alone will help you to be energized and to have fun with your friends when you do go hang out with them. Look at the things you actually like to do. Most of your hobbies, the things your really love, are hard to do in a big group and work better alone or with one or two friends.

9. Decide to be happy, even if no one will accept you. You will one day do this and you will be much happier. No one told me this, so it took me a long time to get. Maybe you could do it earlier and be happy sooner. Build yourself a happy life. Discover the joys of creating, art, writing and nature. Find work you love, no matter how little it pays. Focus on your passions and those good people who will stand by you, even if they aren’t perfect or if they live far away. You don’t need the rest of them to be happy.

10. Bullies shame themselves. Bullies destroy their self-respect. Self-respect is crucial to happiness. Your self-respect gets battered and bruised by being bullied but at least you still have yours. Theirs is gone forever, at least any honest self-respect. They can only ever lie to themselves about being a good person. I never did stoop to their level. but there were times I wanted to.

11. Don’t worry. Those adults who tell you that you have to fight back to stop bullying, even though you’re blind or one against ten and it is clearly a stupid idea—those people are just wrong and they think bullying is something completely different from what it really is. You really are worthy. Their sickness is their own problem.

12. You will be told to be quiet a lot. The people you trust most, your family and close friends will tell you to be quiet because it is hard for them to hear what is happening to you. When people exclude you, they will tell you to be quiet. They will tell you they are excluding you BECAUSE you are not quiet enough. They want your silence. A lot of people who have a disability or other difference have been silent. It does not help. Silence can help you to survive for a moment or two. Don’t be ashamed of the times you were silent to survive but know that it is not what you have a right to. You have a right to speak the truth. You have a right to be heard.

13. Those who love you need to listen, but it is hard for them to hear when you have been hurt so much that mostly what comes out is screaming. Start with “I feel…” State the feeling first. That helps them hear. When they still don’t listen, it is not your fault. It is not your fault that you are emotional or that your words don’t come out all concise and coordinated. Keep working at expressing yourself in ways people can understand. It is helpful. But there is no perfect. Being gentler and calmer will help sometimes. Sometimes it will make them comfortable with dismissing you. Being concise will help sometimes. Sometimes it will let them make their own assumptions.

14. You are enough. It won’t go away because it is them, not you. And you can’t change them without a major change in society. But you will escape from the power of bullies someday.

As i said, this is not a universal message. Bullying comes in different forms. For some kids it is only a few times. For some the physical part is worse than the psychological part, and for others it is visa versa. This is just my message to myself. It would have helped. Now I know what I needed to hear, what could have saved me a lot of dark years, but no one knew it then.

Those who meant well, meant well. They couldn’t know but maybe someone who knows a bullied child will discover a bit of transferable truth in it. I hope so. Feel free to share.

Jokes that hurt without meaning to

This post is not about racists, homophobes, ableists, sexists and other recognized deplorables telling deplorable jokes that we can all agree are damaging and not funny.

Sorry. It’s been done. Here are some links (on people who get mad that women don’t fake laugh at sexist jokes anymore. and how bigoted jokes change who it is socially acceptable to hate), if you need a post about that. It is also a real issue.

This is the “dig a little deeper” post.

We—and here I mean progressive, kind, good-hearted people who don’t want to hurt anyone—need to think about what happens when we accidentally or carelessly tell a joke that hurts someone.

There’s a Facebook meme that says, “If I ever confuse ‘their’ versus ‘there’ and ‘its’ versus ‘it’s’ in the same post, you should take it as a sign that I have been kidnapped and I’m signaling for help.”

I’m a linguist, a grammar buff and an ESL teacher. I get why this is funny.

Those who know and care about the differences in words and who feel that the integrity of language matters get frustrated with the apparent lackadaisical attitude of many on social media toward the written word.

To many of us, sloppy spelling and grammar is the equivalent of going out in public with your fly down, food on your chin, morning breath, body odor and your hair not brushed for three days. It reflects poorly on the person posting a message and discredits what they have to say.

Meanwhile, to many people on social media, typing is simply a different way of talking and the faster it’s done the better.

The joke is funny because:

1. The person who posts the joke is poking some fun at her/himself for being a bit of a grammar nerd,

2. We all know a lot of people online who just don’t care whether they make those mistakes and there is a light rivalry between them and the grammar nerds.

3. Some people’s grammar and spelling is really hilarious.

Um… What? Wait just a minute there.

Number three is a problem. If poor grammar on social media is the equivalent of going out in public disheveled, then laughing at people who present poor grammar is the equivalent of ridiculing a person in public who looks disheveled.

And that person might just be homeless.

Or in the online version, they might be dyslexic, blind, an ESL learner, uneducated due to generational poverty or so stressed by difficult life circumstances that they can’t check over their posts.

Imagine if you will a similar Facebook meme stating, “If I ever start stuffing my face and turn into a fatty, you should take it to mean that I’m trapped in an abusive relationship under threat of violence and that’s how I’m signaling for help.” Imagine a really slim friend posting this.

Okay, it is no longer funny at all. We can probably all agree that this would be insensitive and cruel.

The analogy is closer to home than you may think. Obesity is often considered a product of lazy, lackadaisical habits, just as poor spelling is. But both are often actually caused by or exacerbated by factors beyond a person’s control. Both are also the focus of a lot of overt harassment and ridicule.

I cannot count the number of times someone has called me out online for mixing up a homonym, for a dropped comma or for not catching a bad autocorrect. My specific reasons for these mistakes are being 90 percent blind, using voice recognition to type and being a stressed-out parent on modest means. I’m geographically isolated enough to need social media for both work and social interaction. So I try anyway, but my online escapades are far from perfect.

I’m a professional writer and I graduated suma cum laude in linguistics, so I shouldn’t be sensitive about this

But... ridicule is hard to take, and growing up with a disability I’ve received my full measure. When I see other people ridiculed for it online, even when they are my political opponents, I feel threatened.

Okay, I’ll agree that a president really should check over his tweets. If I were president, I wouldn’t be sending out anything I hadn’t had checked by someone else. There’s having a text disability and there’s being smart about your personal strengths and weaknesses. Presidents can afford line editors and so there isn’t much excuse beyond arrogance and lack of care.

But I still don’t engage in those particular jabs at 45.

I think I did once find that grammar meme funny, years ago, when I first got on social media. I had the same problems I have now with text, but I had not yet encountered the online ridicule over it. A person’s experience of having been ridiculed about the point of the joke does matter.

I recently overreacted to such a joke and called out a friend over it. I felt bad later. I don’t want to be harsh or mean, especially when I’m pretty sure the person who posted it had the first two reasons for humor in mind, not so much the problematic third.

But it is an issue worth thinking about. I have seen my friends who are only intermediate in English be dismissed and laughed off of social media, when it took significant courage for them to speak up in a foreign language. I have been ridiculed for posting in the language of the country where I am an immigrant. It is also a second language for me and I know I make mistakes.

And this is by far not the only joke that many of us may find funny, while it hits someone else like a sucker punch. Some jokes about family relationships may really hurt people who have lost family through adoption or estrangement. Some jokes may reference something sensitive for one group that the individual telling the joke genuinely didn’t realize would be sensitive. Think bananas, jungles and “gypsy” fortune tellers for instance.

I may be experienced enough to personally avoid these, but I’ll guarantee you one thing. There is a joke out there somewhere that I will think is hilarious and either laugh at or share, which will actually hurt someone. And I can pretty much guarantee that the same is true for you.

We don’t know for sure and we’re all likely to make this mistake, no matter what our personal background is. A lot of people will take that as a reason to dismiss the whole thing and say that we should all grow thicker skins and learn to take a joke.

But we know where that leads.

If we say it is all right to tell jokes that hurt people with invisible disabilities or ESL learners, we will be that much closer to social acceptability of overtly racist jokes.

And yet laughter and humor is in desperately short supply. Our hearts cry that the solution cannot be that we walk on eggshells around sharing anything funny.

The best I have for you is this:

1. When I am hurt by such a joke or comment in the future, I will say simply, “That hurts. Here’s why.” I will go back to psychology 101 and use statements starting with “I” rather than accusing the other person of something. I invite you to join me in this resolution.

2. When that unhappy but inevitable day comes when I am told that my humor hurt someone else, I will listen and truly think it through. I will delete jokes that hurt people if it’s online. And I’ll apologize for hurting that person, even if I had no intention of doing so, even if I don’t quite think they are justified.

The experience of hurt is a fact. If it comes from me then I did the hurting. Intention is not irrelevant but it is also not everything. Neither is reasonableness. Saying, “I’m sorry my joke hurt you. Thanks for letting me know. I will try not to hurt you in the future,” costs little.

This isn’t going to solve all the problems of social media or dinner party discourse, let alone the broader world. But it can make our personal circle of social interaction more aware and safer for those who have already had their full measure of hurt.