A path through the wilderness: How I beat isolation-fueled depression

What do depression, parenting, scuba diving, being a racial minority and riding a bicycle all have in common?

You don’t know what it is really like unless you have been there and done it personally.

Depression is a real and often serious illness. It is most broadly described as an illness causing pervasive, long-term feelings of sadness and despair to a degree that hinders daily life. People who have experienced it know that it isn’t easy to beat depression.

Every illness has a cause of some kind. Depression can be sparked by negative events, such as the death of a loved one, limitations brought on by accident or sickness, or prolonged unlivable or oppressive conditions. But grief is not depression and hardships often don’t lead to depression. Most often depression is at least partly caused by biochemical problems, which may have genetic, lifestyle or environmental roots.

Creative Commons image by Moyan Brenn

Depression is not “all in your head” or just something you can get over by thinking yourself out of the problem. But some thoughts can help. However, people telling you to think differently or that all you need is a positive attitude are pretty much guaranteed not to be helpful.

I know about this because I went through depression. My depression was mostly caused by a long-term problematic situation but exacerbated by my genetic tendency toward depression.

I can tell my own story, for what it’s worth. It isn’t a prescription for anyone else though. It’s just footprints in the howling wilderness that is depression, a sign that someone went this way before.

Depression and loneliness often coincide. Being alone and having little social contact can seriously exacerbate many types of depression. And yet people with depression often feel a desire to be alone, not because they don’t like people but because they need quiet to heal, because talk can easily wander into things that cause them pain, and because interaction requires energy. One of the major factors in depression is often a sensation of weight on the body or long-standing exhaustion.

Beyond that, people with depression are often not that easy to be around. Some look and act like what you’d expect from a sad person. Many don’t, but they can exhibit other difficult symptoms, such as irritability, anger, difficulty concentrating, fidgeting or hyperactivity, neediness, rejection of others and/or excessive, unnecessary chatter. As a result, some people with depression may end up more socially isolated because other people avoid them due to things related to the depression, often creating a vicious spiral.

My depression had some of that.

It started with bullying and social ostracism at school. I’ve written about the particulars in other posts. In short, I went through a lot of social exclusion up until about age twenty due to my vision impairment, different looking face and a-typical upbringing.

I had almost no close friends and very little social interaction beyond my family as a child and as a teen. I went through years of schooling in which I was always in a crowd and never allowed to participate socially. At the same time, I was hyper aware of constant “feel good” messages directed at people my age, claiming that friendship is the most important thing in life.

Messages meant to help struggling students stressed that academics and great careers don’t really lead to happiness or a fulfilling life. “The only thing that really matters,” every book, movie and counseling office pamphlet seemed to tell me, “is how many people like you.”

Mostly they didn’t come right out and say the word “popularity,” but instead used the nicer sounding term “friendship,” but I got the message loud and clear. My straight As, athletic skills, artistic talents, volunteer activities and everything else I tried to feel good about were all second best because of the social stigma that kept me isolated.

Over the years, I developed a deep depression—the kind that often goes undiagnosed. I used anger to fuel my energy, despite the heavy sadness that weighed me down. I decided that if I could not have friends, I would be the best in something else. I excelled academically, learned to write professionally and travailed the world.

I found that in distant countries where the culture was very different from my own, I was seen primarily as an exotic foreigner and my vision impairment and different face were often overlooked. I made friends, though due to the conditions of travelling these were often brief, if intense friendships. In the days before universal email, I corresponded with dear friends on several continents by letter, carrying my little green address book around as protectively as my passport.

Each chance to settle in a new place brought hope that here I would finally get it right and make lasting friendships.

That was another message I had absorbed. I knew on some level that much of my social isolation was due to factors beyond my control, but because well-meaning teachers had noticed my social problems in school, I had often been subjected to lectures and training designed to teach “social skills.”

I understood that implicitly, something was wrong with my social skills. In short, my isolation was also my own fault.

Some of those exercises attempted to correct “blindisms,” like my tendency to stare at my fingers while listening to someone talk because I couldn’t see their face, my inability to make eye contact and my difficulty in perceiving other people’s non-verbal communication. I learned not to stare at my fingers or other objects and to endure the discomfort of a world out of focus while I listened attentively. I learned to fake eye contact by looking intently but not fixedly toward where I thought a person’s eyes were. I learned to guess at non-verbal communication fairly effectively.

Other parts of this “social skills” education aimed to moderate the anger that came as a result of the isolation, essentially teaching me to be extra passive, extra nice, extra polite and to focus on other peoples’ interests while making small talk. Some teachers attempted to teach me to dress fashionably, smile demurely and feign normalcy. While I did reasonably well at the first type of lessons, I was not a star student in the second set.

For one thing, I was angry. For another thing, I had difficulty believing that appearances really matter all that much.

I’ve never heard of that last being something common to blind people. I know blind women who are fashion obsessed. But I found the fixation of most of the world on how a person dressed, their posture and even their facial expression to be ridiculous. It took a long time for me to come to terms with that unwelcome reality and to learn both adequate fashion sense and a basic grasp of popular culture.

Empathy for my family and few sighted friends convinced me to try to adapt to their world and curb things they said were an appearance problem.

Still, even as an adult, I was often alone. Due to the work and traveling I did, I was far from my home and family and while I made friends, they were often people who had busy lives and older friendships they cared about more. I was a peripheral person to almost everyone I knew.

When my chosen profession of newspaper journalism became mostly obsolete and I ran into significant health problems in just a few short years, my lack of a local social network became intensely painful again. By this time, I had many dear friends but most of them lived far from where I eventually settled, close to my husband’s job. We had moved to a small town and found the gossip mill to be as vicious as it had been in high school.

The terror of being alone returned. Days spent working alone at my computer were tortuous. I dreaded the approach of weekends alone. I had long since internalized the belief that being alone was a sign of failure and utter rejection. I frantically joined whatever my husband was doing or volunteered in community organizations to make sure I was not alone. And then I found myself miserable and exhausted among people I didn’t really know and couldn’t visually recognize if I did.

I sank back into deep depression and saw no hope of ever getting out.

Unfortunately, I didn’t even keep good journals during that period, so I don’t know exactly how things changed. I know that the circumstances didn’t change. I couldn’t afford therapy and because I maintained a basic level of daily routine through sheer stubbornness, I didn’t end up with medication for depression.

What changed was my assumptions about the purpose of life. Through a mix of extensive reading, spiritual practice and writing a memoir, I came to the conclusion that the core message I had absorbed in my childhood—as well-intentioned as it might have been—was wrong.

Friendship is not the only thing that matters. The number of people who like you or spend time with you is not the primary measure of happiness.

For some reason, our society tells children that in an attempt to make disappointments in academics, sports, competitions and even family conflict feel less bitter. But it is no more true than the hollow hope that money will make one happy.

The second realization came from taking the Myers-Briggs personality test, which showed that I am clearly an introvert, defined as a person who needs significant amounts of time alone. I knew that I often didn’t enjoy social occasions and often felt exhausted around people for long periods of time. But I had believed this was simply a failing on my part.

Once I realized that I actually needed solitude and I let myself think of all the things I loved to do alone—writing, crafts, studying herbs, making videos, reading—I felt an odd slow-motion liberation.

It didn’t happen in one day or even one month or one year. But slowly I decided to build a life in which I would be happy even if I was alone. I did not give up on social interaction. I still welcomed time with friends but I didn’t strive after it. I focused my attention on those things I could more directly control. I built my home around my interests and scheduled my time around what fulfilled me.

Recently, the question of how to work one’s way out of depression connected to loneliness was put to me on an advice forum.

My answer begins with examining the reasons why a person is alone more than they would like. This examination assumes that if the person is asking this question, they are not “just bitter and driving people away” as is one common assumption about lonely people. If a person is truly seeking social contact and interested enough to ask the question and look for ways to handle their own depression, the loneliness is likely not simply “their fault.”

So, there are three other possibilities:

1. You may be truly objectively isolated (living in a place far from other people or amid people where you are a member of a very small and rejected minority..
 
2. You may be an extravert but have some disability or other difference that makes social interaction difficult and causes other people to be prejudiced against you.
 
3. You may be an introvert, meaning that you really do need to have time alone, but you have developed the common assumption that being an introvert is "bad"  and being alone is a sign that you are a failure or a loser. Even if you don't think these things consciously, they may be in your subconscious. 

In the first instance, loneliness is an environmental hardship but it doesn’t reflect poorly on you. It may be a struggle to stay out of depression anyway. Keeping active, maintaining a daily routine and maintaining long-distance contact with friends can help, if the main issue is geographic or other physical separation from others.

In the case of discrimination, depression is harder to avoid. You may be physically with people but still excluded. Still there will be those who accept you. They may just be few and far between.

In the end, you are left with a somewhat more difficult situation. You are geographically separated from those who do accept you, but you can still maintain long-distance contacts and maintain your routine.

It is the third instance, that needs the most internal work but also the one that is the most solvable. If your loneliness stems mainly from the fact that you are actually an introvert, changing your thinking can significantly help. Realizing that solitude can be a good thing is powerful anti-depression medicine. It is unlikely to happen over night, but finding joy in your interests and activities alone can go a long way toward fighting depression.

My struggle with loneliness and depression was a combination of these three factors. I am an introvert, but not an extreme introvert. I need time alone to recharge but I can be very social and gregarious with people. I didn’t always understand that you don’t have to be shy or self-contained to be an introvert. I am talkative and expressive. I just get my energy and rest from being alone.

I took on the common western assumption that being an introvert is "bad"  and that the "key to happiness" is the number and volume of one's friends. As a result, I became seriously depressed. I thought I had to be social all the time to not be “a loser.”

I was terrified of being alone. When I was alone I was miserable, always thinking about why I had no option to be with someone. To avoid this, I ran community organizations, volunteered and got involved in all sorts of things. While this had its uses, I was exhausted and rarely enjoyed the social interaction. I was always under strain because I am an introvert by temperament and that means that I really physically need time alone to recharge, even when I didn't know it.
 
The key was understanding that being alone is not bad or a sign of failure, that I could enjoy my interests alone, that I needed solitude on a deep biological level and that some people would not accept me no matter what I did or how many “social skills” I learned. The first step was throwing off the stereotype I had absorbed from pop culture that says that your happiness is based on how many friends you have, on being one of those smiling faces in a big crowd on a Facebook photo and getting a ton of "likes" under it.

I learned to live in a way that I truly enjoy rather than in a way that I thought I was supposed to enjoy. Your way may be different from mine but the key is finding what it is, what makes you happy and what fulfills you.. If you are at least partly an introvert, you will have interests that can be pursued alone.

You may have been discouraged from doing things alone and warned that if you “shut yourself away,” you will never have any friends. That is only a danger if you see being alone as a failure and a sign of rejection. If you are enjoying yourself and allowing the solitude to refuel you, you will likely reemerge ready to take on the social world on a regular basis.

What do the wealthy think and do about climate change?

There is a tide turning in one important area—the recognition of climate change. I can feel it among people and see it in the mainstream media. The fires in California have become a tipping point in public opinion on climate change.

There is a sense—finally!!!—that climate change has become a top progressive priority in the United States, up there with institutional racism and health care. There is even a sense that the large majority of people-beyond progressives-now accept the facts. People have seen that science means something in the real world.

That is good, but…

Progressives turning is not enough. The majority of the public in wealthy countries turning is not enough. Even the mainstream media turning is not enough. Only 25 percent of climate-damaging emissions can be impacted by responsible personal choices in diet, energy use, transportation and so forth.

The vast majority of climate-changing emissions come not from personal choices but from the wealthy, the infrastructure politically controlled by the wealthy and the big industry owned by the wealthy. The demographic that matters most is the top five percent or so of the income scale. those with decision-making power over large industries and public institutions as well as over their own fortunes.

And the picture is still bleak there. Kanye West showed what the attitude of many of the wealthy is when he hired private firefighters to keep his home safe while much of California burned.

I recently conducted a small survey of wealthy people to determine their attitudes and actions regarding climate change. Last summer I surveyed an online social network frequented by many wealthy individuals or at least those who self-identify as exceptionally wealthy. This social network is broad enough to encompass every political leaning but those who answered my survey were self selected.

The survey is not large enough to be a good statistical sample. Still their responses are revealing. Individuals in the network reported on their own beliefs as well as those they observe in their social circle of wealthy friends and acquaintances.

My survey question was, “Do wealthy, educated people A. put a large percent of their resources into fighting human-induced climate change, B. not care or not believe the consequences will affect them, C. feel too despairing or apathetic to do anything about it or D. deny the consensus of the vast majority of scientists on climate change?

Of those who reported on their own beliefs, only one in ten said they would do or previously had done anything to mitigate climate change. One out of ten reported the apathy and despair of option C. The rest were split between B (40 percent) and D (40 percent).

The format encouraged explanation of their views and many of the responses were angry and vehement. Typical explanations include the following excerpts:

“It is not the job of the wealthy to take care of everything. It is the responsibility of people as a whole to take care of the environment.”

”If you are so convinced that major climate change is coming then you better do something about it. I think about it about as much as myths like Bigfoot,”

“Fact is many climate predictions have fallen flat, so you could reasonably conclude the latest climate predictions are probably fiction.”

“The climate change prompters (sic) are very loud, and have tried to shut up their opposition. And there are a significant number of people (sic) think the crisis is much smaller than reported. There are also many people who want to use “climate change” to push their political or cultural agenda, such as urbanization, mass transit, solar power, and even vegetarianism.”

It is particularly troubling that people who identify as wealthy and educated so commonly either deny climate change outright or deny the seriousness of the impacts. The reasons thought up about why scientists might fabricate evidence, including the concept that some people want things like public transit and solar power either as money-making schemes or because of personal enjoyment of them, are depressingly under-thought.

Three out of ten respondents also commented on their beliefs about what other wealthy people do or think about climate change. These responses were split evenly between B, C and D. The despair of option C climbed when the answer described the opinions of others. Somehow few respondents wanted to self-identify as despairing or apathetic, which is one big difference between the responses of the wealthy and those of the general population, in which despair and apathy is commonly self-reported.

Another difference between the response of the wealthy to climate change versus that of the general population was pointed out by a respondent, who wrote; “For wealthy people, climate change isn’t so bad. If there is a food crisis, it means other people will starve, so they feel a tinge of remorse, but it won’t impact them directly. If one of their houses gets flooded, they can just move. They have options… So they all feel like someone should be doing something, but not them, someone else. Because for them, doing something would mean losing the benefit of being wealthy.”

If this respondent is correct, it is possible that some of the wealthy who either claim to deny climate change or simply ignore such a survey, actually are banking on the assumption that climate change will primarily affect the poor and middle classes.

What does this mean for people who are highly concerned about climate change and willing to act on this concern?

Again, my survey isn’t a scientific study but it gives some indication of common reactions to climate change in the top wealth bracket. Those who ignored the survey are likely to be more apathetic, but if there had been individuals in the wealthy social network who were acutely concerned about climate change, some of them would have answered over the course of several months when the survey was displayed. It may be that apathetic respondents did not respond because they were apathetic not just about the issue of climate change but even about discussing it in a survey, but the lack of positive responses clearly indicates a real lack of positive thinking on the issue in this economic class.

Given the disproportionate impact of the wealthy on climate policy and industrial causes, it is clear that this demographic is one that should be addressed by serious climate action. The wealthy may suffer less from climate change than others but they will be impacted negatively. They may need more factual education.

On the other hand, many wealthy people today may know the facts well enough but choose to deny climate change publicly for profit or to avoid the shame of being unresponsive on an issue that will cause massive death and harm to many others. The wealthy are not immune to public pressure and the great impact that even a few wealthy individuals becoming active in combating climate change is worth a significant amount of effort to achieve.

It may be helpful to focus campaigns more on the impact of wealthy lifestyles, industry and policy influence, revealing to the public at large the crucial role of the wealthy in driving climate change. In any event, climate campaigns focused on those with wealth and political power will be more likely to get results in the time available.

Putting hope back into the holidays

It has been a particularly rough week here and a particularly rough year everywhere. Looking through my records I notice that last year at the winter solstice (a month and a half after the election of Donald Trump), the image I led my post with was that of a dying, red sun in a gray and gloomy forest.

We knew we were headed for hard times then, and now hard times have come. Wild fires raged across dry areas all autumn and areas that are not usually dry were parched with unusual thirst. More innocent people were shot down. Racism became more brazen and public. Several countries started violently fending off waves of refugees from worse-hit regions. 

The state of the outer world mirrors my intimate life this week. As many of my readers know, one of my children struggles with neuro-diversity that takes a toll on the health of the whole household. This week was particularly difficult--a lot of screaming, meltdowns multiple times per day, extreme stress and a lot of glass shards.

I feel like I'm fighting for my life and the only thing I can fight is a person even more vulnerable than myself, who is not to blame. If that is not a mirror of the outside world, I don't know what it is. 

I hear the stealthy "scritch!" of a match struck across the table while I'm getting dinner and my hand automatically lashes out, ready to grab, knock something out of her hand if necessary, defend the home...

My hand freezes with inches to spare. The tiny flame catches on the wick of first candle in the Yule wreath. Anxiety wars with guilt within me and nearly drowns my little sigh of gladness. I am so tired of fighting disasters moment by moment and of being on guard every second in between.

I stifle the yell in my throat and say, my voice shaking a bit, "Thank you for lighting the candles, honey. Please be gentle." 

And for once she is. I watch closely, pausing in the midst of loading plates. There are moments like this. That's one reason I have to be on guard. I never know what to expect. I can no more relax in my home than we can let our guard down in the world beyond these four snow-proof walls.

It is trite to take such a small, glowing thing--a literal candle flame moment--and expound upon it to fabricate a message of hope. "Don't despair for even a struggling child lit a candle." 

But it does bring me a moment of gladness. It is more in the noticing that there are such moments, not the act itself. 

After a morning of getting the kids to school for one of the last days before break, I walk up the hill to let the chickens out. Snow crunches under my boots and I have to give the door an extra tug against the frost.

I turn back to the trail down the ridge and take a long breath of crisp, cold air. The solstice sun is still below the horizon but pink and gold light sparkles on the ice crystals that adorn the bare branches of the fruit trees. A moment of beauty.

I give thanks for the cold. It will help a bit to beat back the climate-change-exacerbated invasive pests that plague our region. And I hope against hope that this is a good and natural cold snap, not one created by melting ice and shifting currents. I pray for more snow, ballast against another summer of drought. 

In dark times, you never know when the next moment of beauty or respite will come again. It's about noticing--taking that breath and noticing. 

The winter solstice is about hope. It always has been in northern lands. Here on the 50th parallel where we get only seven short hours of real daylight at this time of year, the return of the light is a big deal. 

But we won't see much difference for weeks yet. The hope of this season is symbolic and a bit forced.

That's okay. We hope because we must. 

My friends, many of you write that you are certain that climate change has already passed the crucial tipping points. Many of you are aghast at how bigotry and hate have sprouted like mushrooms after rain, proving that the relative civility of years past was a result of suppression rather than deep social change. Many of you despair of finding common ground, even with those you love, let alone with people in other regions of the country or the world. 

And there is no denying this darkness. I will not try to tell you it is not real or that I can promise some sort of supernatural hope. I do not know for sure that the light will return in these areas, as it does in the sky. 

I know only that without hope, you fall and die or become so angry or jaded that you feed the roots of pain and suffering. 

The winter solstice and essentially every holiday modeled after it by various religions--Yule, Christmas, Hanukkah, Dong Zhi et al--they are all at the core about hope--not because it is real, but because it is necessary.

Hope because the alternatives are not feasible. 

Embrace those near you who are willing to embrace. May the holidays you hold dear bring you joy and peace and some much needed comfort. 

But above all may they strengthen your most necessary capacity for hope.

You don't have to forgive

I’ve been staring at photos of Jemel Roberson for almost two weeks now. Every violent death of innocent people—there have been so many lately—is a tragedy. Every time the police in the US kill a black person for no conceivable reason, other than prejudice and disregard for their lives, it’s an outrage.

But there is something about Roberson that has me by the throat. It grabbed me even before I saw the pictures of him with his nine-month-old baby. It’s the context. He saved people from a mass shooting, yet another one. He did what all those who oppose sensible gun regulations keep saying some good guy with a gun must do. And then they shot him dead.

And I watch black men and women speak about it—calmly, with dignity, with tightly controlled emotions. I don’t think I could talk about it in person without getting upset. Writing has always been easier for me that way.

But of course, I’m not black. I haven’t been forcibly taught to control my emotions or hide outrage to such an extreme. I respect that dignified control. I try to emulate it without much success. Today it makes me think of an incident that happened at my house, which was a lesson on self-control, manners and forgiveness.

My daughter bursts in the front door, breathless and wide-eyed. “They called her “black face!’” she gasps.

Creatuve Commons image via pixabay

My husband just drove up with my daughter and her Nigerian friend from the city, age 8, in the car.

“Who?” I spin around. Our little town is very, very white, something my slightly brown children are all too aware of.

Still gasping out each word, my daughter points out to the road. She says both my son and a boy visiting us from across town ran up to my daughter’s friend when she got out of the car and started taunting her, calling her “black face” and a the local term for “African,” which isn’t supposed to be derogatory but lots of things depend on tone.

I run out the door and find the little girl on the front porch alone. I bring her inside and ask for her take on the story. She is mostly silent, answering with shrugs, nods and shakes of the head with her lips pressed together.

“Is it okay to call you that?” I asked.

Shrug.

“Do kids at school call you that?” I know she goes to school in a mostly white area as well.

Nod.

“Do you like it when they do?”

Shake.

The girl is only eight and we’re on the leading edge of Eastern Europe. We don’t exactly get consciousness raising here, so I can’t assume much. I explain that it isn’t okay for people to call her things she doesn’t like or to make fun of how she looks. As I explain, she slowly relaxes. This is only the second time she’s been away from home over night with white people and she barely got out of the car when this happened.

Justice will wait a moment in favor of therapy. I spend a good long time reassuring her that this is not okay and I won’t let anyone say those things in my house, no matter what. I reassure her that she is beautiful—and she is objectively stunning for an eight-year-old as it so happens. She nods but looks unconvinced.

I do get confirmation that it was my son as well as his friend calling names and I try not to show that this not only deeply embarrasses me but fills me with rage. She doesn’t need my emotions. but my kids are adopted from a racially marginalized group here in Eastern Europe and they have been called “black face” themselves, although they are many shades lighter than the Nigerian girl.

That my son would participate in this… There are no words.

I give her my own apology and send both girls upstairs to play and go out to slay demons.

When I corner the boys outside, they are initially unrepentant—silly, stumbling and giggling. This almost, but not quite, breaks my cool. I want nothing more than to rip them to shreds.

I ask for their side of the story. They attempt to say they were just playing, just kidding, but admit to using the words. The visiting boy admits fairly easily. He isn’t entirely sure these are bad words. My son knows better and it takes longer to get the truth out of him.

I need to cool off to keep from doing something illegal, so I put my son behind one door and the other boy alone on the porch for a time-out. After awhile, my son is more open to talking and he tells all.

The other little boy is frightened and crying. I know that his father just left definitively a couple of weeks ago and that his mother cleans houses. I note with quiet irony that the Nigerian girl’s mother cleans for a living too.

When children do really bad or dangerous things, things parents want to stop in their tracks, there is a conundrum. It isn’t garden-variety naughtiness and with rambunctious kids like mine, they have already seen every acceptable disciplinary strategy in more than a dozen parenting books. Giving them regular discipline (time-out, apologize, revoke video game privileges) seems woefully inadequate and I want to make this eminently memorable.

I talk to my son alone, keeping my fury in check.

“Why did you call her that?”

“It was funny.”

“Has anyone ever called you that?”

Negative head shake.

“Well, actually I happen to know that they did when you were in kindergarten. Lots. It was a big problem. That one teacher…”

Shrug.

I had to bite my tongue. Unlike the kids and some parents, the teacher had not called him “black” or “gypsy” but she had said “those people have trouble in school” and “it’s about the genes, you know.” In the spring she had insisted that he had a contagious skin disease and would be banned from kindergarten for the several weeks it would take to be completely screened by dermatologists. Fortunately, the pediatrician stood up to her. It was ant bites. But all Marik knew was that he had to go to the doctor and the teacher was upset and the doctor said it was silly. As a mother you protect six-year-olds from some of the world’s worst truths, but kids and parents had said those things to him.

“Do you like it when people call you something like that?” I pressed.

Head shake.

Sigh. “Do you think you can give her a really really good apology?”

Nod.

I am far from satisfied, but I go out to talk to the other boy. He’s wiping his tears on his sleeve. This is even harder, though less personally humiliating, since he isn’t my son.

“Have you ever seen an African person before?” We essentially don’t have any local people of African origin here, so this is more or less how I phrase it.

“No.”

Much as I thought. “Why did you call her those words and laugh at her?”

Shrug. “I don’t know.”

“Have you heard other people use those words about African people or other people with brown skin?”

“Yeah.”

“I understand that you heard older kids and grownups use those words. That still doesn’t mean they are okay. It is not okay to call people names and I will never allow those kinds of words at my house. Even outside my house, if you use them, you won’t be welcome at my house. Do you understand me?”

Slight nod.

“Do you think you can say you’re sorry in a really nice way?”

“She’s black. It’s true.”

I’m momentarily at a loss for words. He’s only seven. I didn’t expect much resistance, though I didn’t have any great hopes of making a lasting impression on him either.

I again have to leave in order to avoid coming down like a ton of bricks on someone else’s kid.

I leave the boys in separate confinement for awhile yet. Then I bring them both out to the porch. I tell them that they need to apologize extremely well or my son’s friend will have to go home immediately. I know his single mother is looking forward to a day of rest with him here, but that’s just tough. He will go home if he is recalcitrant on this one.

Before I’m finished the two have started giggling again but I reiterate the consequences and they start to get serious, when they realize I mean it. I have my phone out, ready to make the call.

They start crying and we discuss more. My son’s friend unexpectedly states that kids at school do call my son those names. My son argues that it is mostly only one kid. Obviously he wasn’t telling the full truth before. I discuss with them the ridiculous nature of calling someone with slightly tan skin “black” and point out that the Nigerian girl is also not technically black in color, but more like dark brown. I reiterate that these differences don’t matter and it it is not okay to laugh at someone’s appearance anyway.

Slowly they both appear a bit more genuinely contrite. Finally, I leave them to plan their profuse apology and go upstairs to see the girls again.

I ask the Nigerian girl if she would come down, when she isn’t busy. Overly polite child that she is, she jumps up immediately to go downstairs. I ask her if she would be willing to listen to the boys’ apology. She agrees.

We join the boys outside, and I reiterate for everyone that it isn’t okay to call people names or laugh at anyone’s appearance or background. The boys actually do a pretty good job of apologizing and I almost ask, “Do you forgive them?” But I bite my tongue again.

She’s standing there with her head high, looking down on them from the top step of the porch, while they stand on the grass in the deepening dusk. I think on the fact that white people have probably never apologized to her for racism before. It will be a rarity in her future as well, if she ever gets another such apology, and the racism isn’t going to stop.

The handling of this moment is as crucial as any other step I’ve taken in resolving this deceptively childish conflict.

“You don’t have to forgive them,” I tell her. “They can handle it themselves. But you can forgive them if it makes you feel any better.”

She takes a moment more to look down on them and then says with the most impeccable manners I could wish my kids had, “I forgive you. Thank you for your apology.”

Then she turns and goes back to playing upstairs.

I let the boys come in the house and mostly things continue well, except that I discover that it is the Nigerian girl’s birthday. They don’t do birthday parties in her family, so no one mentioned it when we invited her. I decide this is a perfect opportunity to make the rest of the day all about her.

The boys have to work off a bit of their naughtiness by cleaning the floor. I whip together the world’s fastest chocolate cake and make the boys wrap a gift. The birthday girl is wide-eyed and stunned when she comes downstairs again to our impromptu decorations and party. She says she’s seen birthday parties on TV and she does everything just like in the movies, closing her eyes and putting on a dramatic show of making a wish and blowing out the candles.

In the middle of eating the cake, the seven-year-old who had never seen a black person up close before blurts, “At least you don’t have to worry about getting chocolate on your face, since…”:

I growl his name and fix him with a death-glare across the table. He gulps and wisely shuts up.

She doesn’t appear to notice.

By the time I tuck all four kids into bed, I am aching and exhausted. I feel like I have been literally fighting a war. I don’t know if I’ve won anything this day and I am sure that tomorrow and every single day we’ll still be fighting it.

How does this relate to the case of Jemel Roberson exactly? Well, it isn’t just that case of course. But I would say to all the black people who hurt inside or out because of this lethal and crushing racism we are living with, “Thank you for your calm and your manners and your endless attempts to live in peace with us. You do not have to forgive white people, even when we apologize. We can live with not being forgiven. What we need is to learn and remember and do better in the future.”

The first reason for outrage: Living with climate change

Your grown children scrape at the rock-hard ground with salvaged hand tools, trying to turn the baked mud. They have realized their dreams and they have professional careers but today—in 2050—everyone has to keep a garden to supplement the limited food they can buy at exorbitant prices.

A torrential flood came through last winter and took away what was left of the homes built in better times. But the water didn’t stay.

When the three-day storm was spent, all that was left was stinking mud on everything—tainted with the bodies of people and animals and with chemical spills. Now the drought has returned with a vengeance. It hasn’t rained in weeks and early spring looks like late summer used to look, at least in the sky.

Creative Commons by Asia Development Bank

There are no trees left. Those were cut long ago for fires and to build makeshift shelters when houses were destroyed by winter floods and summer brush fires. What is left are mostly the hardier sort of weeds. Even if they can plant the seeds they have left, your children won’t see much of a harvest. Just like last year, the insects are the only life that is flourishing and they swarm in clouds that can make breathing difficult on some days.

Even with their career jobs, they need this garden. Your youngest grandchildren—which you may well not be alive to meet, if you were in your twenties in 2018—sit listlessly in the dust beside the garden. The low-nutrient diet and grinding stress of survival takes its toll on both mind and body, especially for the youngest ones. They can barely muster the energy to cry, let alone play. They are wracked by sicknesses that your generation believed banished from your wealthy country forever.

They are still better off than the wretches your children see along the road outside, refugees from the south. Long lines of refugees were something you saw on the news. They are now something your children and grandchildren see on their doorstep and all along the high fences your children built to protect their scrubby garden.

The lines of people trudging by never end and they look like walking skeletons. They don’t beg as much as they used to. By now they know that your children don’t have enough for their own and they go on, hoping against all the facts to find a place with some rain… but not too much rain.

This is what famine and drought look like and it’s what life will likely resemble in 2050 in the US Midwest and Southern Europe, if carbon emissions from coal, gas or oil burning and factory farming continue apace. According to the recent report of the UN’s Intergovernmental Panel on Climate Change, this is the kind of impact we can expect from a 2°C rise in global average temperature, a level we’ll reach by around 2050 if we continue as we are and by 2100 even if we implement the more widely accepted agreements on emissions reduction.

Creative Commons image by Tim J. Keegan

A 2°C temperature rise doesn’t sound bad to many people in northern climates. The problem is that it is an average and it isn’t equally distributed. It also is a lot more drastic than it sounds for the earth’s climate. Even such a small-sounding temperature change would mean widespread drought.

Extreme weather events would hit temperate areas the way they are now hitting desert areas such as the Middle East. The areas hit today will become uninhabitable.

Still many people don’t register the realities of such impacts. Scientists often call out people who predict the collapse of civilization due to climate change. A 2°C temperature rise may be bad but it would probably not mean the complete destruction of modern industrial and consumer society. And most people in wealthy countries will still live, just poorer and shorter lives.

Scientists deal in probabilities and theories. They aren't supposed to look at impacts personally or allow emotion in. That prevents them from extrapolating out what their data would actually mean for their own family as I have done here. And even so, many climate scientists are suffering from clinical levels of anxiety and depression due to their understanding of what is coming and the lack of response from the wider population or the outright denial of many in positions with the power to change it.

If you are over thirty and your children are already half grown, this may be the fate in store for your grandchildren and great grandchildren instead. But he fact still remains, that this is the life we are creating. On paper the predictions don’t sound that bad for people in temperate climates. Most predictions focus on the fact that some more vulnerable areas which are already very hot will become uninhabitable either by flooding or extreme drought. Many people in the equatorial countries may die outright.

But those countries are far from the English-speaking world. And the predictions scientists put forward about us sound dry and theoretical. “Decreases in crop yields, increases in pest infestations and extreme weather events, increases in disease, spreading drought in certain areas and increases in coastal flooding.”

If you have never been bothered by any of these things and do not currently raise food from the land, it all sounds distant and like someone else’s problem. Many people assume it will simply mean that food is more expensive. But I have spent a fair amount of time in countries where this type of weather is common today, the countries likely to be hit hardest and earliest by climate change, such as Bangladesh. The weather that scientists predict for much of the American west and the Midwest and for large parts of Central Europe is the weather these vulnerable places already have and their dismal economic realities may be a crystal ball in which we can see our own future.

Creative Commons image by Tavis Ford

Food is likely to become so expensive that many more people will have to be engaged in growing or attempting to grow food, even if it is only to supplement what they can buy.

The lackadaisical view of climate change so common in society today isn’t really surprising. On the one hand, we have dry predictions which give little indication of the wrenching realities they factually describe.

On the other hand, there are the more fictionalized predictions of the collapse of civilization as we know it and the death of whole swaths of the population.

One sounds incremental and abstract. The other is easy to dismiss as unrealistic and if it were actually likely, many people would decide it’s better to live with all comforts now than struggle to be one of the few miserable survivors in such a world. Better to die quickly is the trendy, distanced logic, so why try to fight it if we’re doomed anyway?

But neither of these is a real depiction of what climate change means for us and our families. The reality isn’t total annihilation and neither is it merely a matter of higher prices. It means a lot of real hardship and heartbreak. Life will go on unless global average temperatures reach the 4°-5°C-above-pre-industrial-temperatures range. But it will be a much harder life than it needs to be.

Climate change is currently the umpteenth reason for outrage. Many of us are so exhausted by poverty, discrimination, racism, sexual assault, war, ableism, denial of health care, general bullying and immediate environmental pollution that climate change gets put on the back burner or at least low on the activist’s list of grievances.

It should be the first reason for outrage and the rallying cry. Climate change effects everyone and it is the thing that across all underprivileged groups we have contributed to least but which harms us most. It is caused only slightly by individual actions and more by corporations and heavy industry. It is the most essential injustice and those who will suffer most from it are those who have no voice at all—small children and those not yet born.

At the new moon, I will paint another word picture about climate change—this time about the sort of effort and lifestyle it would take to prevent this level of climate change. Outrage is necessary and so is hope.

Who would I have been in the days leading up to Nazi Germany, Stalinist Prague or US slavery times?

In 1996, I sat in a class of American college students on a study-abroad program in Olomouc in the Czech Republic. A Czech man just a few years older than us came in to give a lecture about life in the 1980s under Stalinist totalitarianism and the Soviet occupation. I don’t remember the exact details of the lecture but it was good. It was moving and detailed and real.

I was the only one in the class who knew much of it already and who spoke Czech. I had been to the country before in 1992 and had my mind exploded during a week in a rustic cabin with a group of young people who had been quiet dissidents three years earlier, copying down illegal protest songs by hand in tattered notebooks.

Creative Commons image by Xabier Otegi

I absorbed the university lecture eagerly, asking several questions at the end to draw out interesting parts of the man’s story. Then I made myself stop. I didn’t want to hog the space and I knew I should let the others ask. But when I looked around there was not one hand raised.

One of the American college students, sprawled in a chair at the back of the class, drawled, “Yeah, that’s the difference over here. Americans would never have put up with that.”

It sounds like a cliche but I really felt like something hit me in the chest. I had no breath. Before I could recover, the class broke up and the lecturer exited quickly, while my classmates put their notebooks away and went out for an afternoon of Czech beer.

Listening to the confirmation of Brett Kavanaugh to the US supreme Court and the protesters screaming for all they were worth from the gallery, I thought of that remark and of Jan Palach, the student who lit himself on fire in protest of the Soviet invasion of 1968. Palach is a symbol of the final and most extreme protest when oppression has become so immense that dissent is easily silenced, dismissed, buried or imprisoned.

Things have gone from bad to worse in the US in the past two years. The quiet corporate coop that made a mockery of electoral democracy for decades has become overt. The extreme racist, misogynist, eco-cidal ideology that was threatening before has taken more and more power by more and more unjustifiable means.

Plenty of readers will sneer at my title and say that I should not compare this to Nazi Germany, Stalinist Czechoslovakia or slavery times. We are not seeing people shot in the streets… well, except when they are black and vaguely suspected of something. We can still protest. We cannot compare ourselves to Jan Palach and those who had all of their other options taken away.

And that is true. We still can protest. And that is why those screams made me think of Jan Palach. Those protesters hauled off by security were mocked by many. They screamed as a man credibly accused of sexual assault, a man with clearly stated misogynist and extremist views was given lifetime power over us.

They yelled and made a scene and they were ultimately powerless to do anything. The charade of “democracy” went on with smug indifference. Those in power snicker and call their “tantrums” futile and petty.

But it is not nothing to scream at injustice and the destruction of a democratic country. It is not nothing. It is the one thing that still stands between us and the likes of Jan Palach. We can still scream where it is heard. He couldn’t without ending up being tortured in a dark cell.

There is a meme on Facebook that says “You now know what you would have done in Nazi Germany. You’re doing it right now.”

The idea is that the early days of Nazi Germany did not look so different from our current situation, a terribly polarized country with a ridiculous, extreme right-wing faction gaining popular support among a certain frustrated portion of the population while most of the traditional powers tut-tutted and insisted that any resistance be done through their channels. Most of the middle class and intellectuals were sure for a very long time that it wasn’t really that bad, that these nuts would not get total control. They considered the Nazis to be deplorable certainly but not a real threat.

And most people either were swept up into the extremism because they were easily swayed by advertising and razzle-dazzle or they disliked the extremists who gained power but just grumbled quietly about it and mostly made sure not to take any great personal risks.

The thinking behind the meme is that the beginnings of Nazi Germany looked a lot like the United States today and so it is now easy to tell what kind of person you would have been then. And in some ways that meme is right. We have far different technology and public discourse and we are more aware of totalitarianism than most people were then. But the same dynamic is clearly visible, the same divided groups and the same vulnerability to manipulative extremism.

I don’t compare our times to the height of Nazi Germany, Stalinist Prague or slavery times. I do compare our times to the run-up to such moments in history. We are still in the stage where we can scream and not be shot—most of us. We are not yet faced with the choice Jan Palach perceived—to live in utter oppression or to die loudly enough that the scream will at least break the oppressive silence.

And so I ask myself who would I have been in the days leading up to the darkest times in history?

And today I know the answer.

I would have been a writer who wrote the truth even if it meant losing jobs—and eventually a career—over it. I have done that. I have lost jobs and lost my hard-fought career in newspaper journalism with one of the best national newspapers in large part because I wouldn’t tow the line and I broke out of the mold of the celebrity-focused, reality-impaired news too often. I had a couple of run-ins with censorship of historical facts and ended up on the NRA’s journalist “hit list” before I was done.

I would have been a member of a vulnerable group who could not get work or participate in mainstream society in my own country because of the self-destructive way that country was organized which directly excluded my group. Because of that I would have been forced to leave the country and spend my life far from my home and family. I left the United States twenty years ago because as a legally blind person I could not be independent and fully participate in society without public transportation, which is today one of the greatest needs for everyone to combat climate change. Because I am legally blind, the community I emigrated to does not entirely accept me either, but I do have public transportation and so I can have a normal life, a family and a job. The same was true of many who fled destructive regimes for other reasons—less-than enthusiastic welcome but a chance to live.

Whether I stayed or left, I would have been active in protest movements, organizing as long and as hard as I could. I led protests against the war in Iraq in my city, even though it cost me another job and impacted my health. But for a long time I would not have been among those who dropped everything to protest full-time or risked the most. I participated in actions to support Greenpeace blockaders who did risk their lives to protest US imperialism and environmental destruction. I was terribly afraid when I was almost caught by military police while bringing food to an encampment. All I risked that time was a trip to the local jail, a fine and a record. But I quaked with fear and because I was trying to adopt children and didn’t want the possible bureaucratic repercussions, I didn’t ask to take on a riskier role in the protests.

In those other times, I still would have adopted children from a vulnerable group, despite disapproval from many sides. I have done that. I would have been one of those people who held down a hearth and cooked food and let people traveling to protests or fleeing from danger sleep in their home. That too I have done.

Creative Commons image by Michelle of flickr.com

I would also have been among those who eventually became too exhausted by hand-to-mouth work and health problems to go to most protests. I am exhausted. Most protests are too far and too difficult for me to get to anymore. Then again, needy children keep me tied down. I would have been one of those who found a small corner to hide in when I got older and less physically strong. I would have continued in small ways to resist personally and to give help to the endangered ones who crossed my path.

I would have been among those who wished to do something significant, to join the “real resistance,” but didn’t first because of fear and later because of those who already depended on me. I have fantasies of helping refugees from war-torn and climate-devastated regions. I have fantasies of going off to live in camps at places like Standing Rock to put my body between the corporations and the destruction of the earth’s climate and our children’s future. But I haven’t done it. I am less afraid now that I am older. There is less at stake because there is less of my life and no career or adoption process left to lose.

I would have been a quiet ally to those most targeted by the oppression. I would have stood up for them against social bullying and helped if I could. But I wouldn’t have had either the energy or the capacity to do much that really mattered, because I am also not among the privileged and because even when I don’t fear for my own life and livelihood, I fear for my children, and because of distance and lack of funds and reticence toward cold, hard living.

I would not have been a hero or one remembered by history. I would not have been a collaborator or someone who willfully didn’t see what was happening. I would have been willing to sacrifice a job or a career, but not my family in order to tell the truth. I would have done small things to help those worst affected and felt guilty that I didn’t do more. I would have been among those taking carefully measured risks. And unless I was among the unlucky few—like say Heather Heyer— I wouldn’t have paid the highest price. I know because that is the kind of character I am in our current story.

Have you let yourself think this through? Who would you have been?

Avoid falsely easy answers. You may be among those targeted by hate today but there are likely others who are in greater danger—assuming you have the leisure to be reading my blog.

If you are among those most targeted today, consider that victims also had options back then. Would you have been among those who left early, who found a way out or a way to fight back? Would you have been among those who covered their ears and prayed that it would not go so far? Would you have been among those who blamed your friends and neighbors or joined with them in mutual aid to survive? What is it you are doing today? Are you lashing out at allies or frozen with fear or getting your children to safety and building alliances?

And if you are part of a group that is not yet targeted, who would you have been then? Would you have been the bystander who knew a bit of what was going on but chose not to get too involved? Would you have been the one who who shut their ears and eyes to the suffering of others and the devastation of their homes? Would you have had the courage to use what rights you had to say “no,” to protest loudly when you could and to give aid quietly?

Who would you have been? A lot of the wondering has been resolved in the past two years. Who are you now?

In the hurricane: How one child's storm can swamp a family

Snapshot

Rain patters on the roof on a Saturday morning. The comforting, homey sounds of pouring cereal and my seven-year-old’s chatter lull me.

My nine-year-old daughter cruises around the room, poking at objects, shifting things around randomly, dropping things, babbling in the toddler syllables that take over at home from her fairly normal speech in public.

After a few minutes, she disappears outside. I will need to corral her soon and ensure that she takes her supplements, brushes her hair and eats something, preferably something with protein, but I put it off for a few more minutes. We almost never have a relaxed weekend morning at home.

The seven-year-old starts his piano practice and homework. The nine-year-old has been in and out several times. I manage to get her to swallow the supplements and she only screams a little when she has to sit and brush her hair. They have been really good this morning and I remember that there is the last of a cobbler in the oven.

I talk my daughter into an egg for breakfast, as brain ballast, and then tell them we’ll have a morning treat—cobbler with some spray whipped cream from the can that Papa got yesterday.

Creative Commons image by Hamid Najafi

I know this is one of my daughter’s favorites. With its contents of sugar and preservatives, canned whipped cream isn’t great for her and it could cause a bit of chaos and mental fragility today, but she’ll be able to blow off steam outside.

The kids both cheer, united for once, and I go to the fridge to get the coveted can.

A quick glance doesn’t reveal it so I start shifting containers. Then I start a systematic search, top to bottom. No whipped cream. I

know it was there last night and I know my husband doesn’t like it. I ask my daughter, who is most invested in it to come and look. She scours the fridge and sounds completely baffled by the missing whipped cream, though not upset.

“I’m going outside,” she says with a resigned shrug. “I give up.” No baby talk in that at least.

I notice when she’s at the door. She’s headed out the door away from the trampoline and the swing. “Where are you going? “ I ask absently, my head still in the fridge.

“To see the chickens,” she says and slams the door.

A few minutes later she is back, buzzing around, her vibe becoming more frantic as the morning progresses. She knocks books off the table and scatters bits of broken plastic from a toy across the floor. She puts muddy hands on the food I’m making for lunch. She won’t either do her homework or play. She refuses cobbler with no whipped cream. Too much fruit. “Yucky.”

Then she says she’s going to visit the chickens again.

“What are you doing with the chickens? “ A jolt of alarm goes into me. Our chickens are large, tough and utilitarian. I am only a little concerned for their safety, but she has never shown any interest in the chickens before, except for the one day when we brought home somewhat cute, half-grown chicks.

“I just really like the chickens. I really really like them,” she calls back as she slams the door again.

Suspicion blooms inside me. I meet my seven-year-old’s gaze. He doesn’t say a word but slides off his chair and dashes to the door. Not a word has passed between us on the subject but I know he is going to spy out what she is doing at the chicken coop. It will no doubt result in conflict and very possibly a fist fight.

I’m too exhausted to stop him though. The past few days have been a whirlwind—an endless string of work, her meltdowns, doctor’s appointments and school problems. The relative calm of cooking while dealing with kids has me groggy. And anyway it’s seventy yards up a steep hill to the chicken coop and I have onions frying in a pan for soup and a dishpan full of soapy dishes.

Someone needs to check on what is going on at the chicken coop, so I let the seven-year-old do it.

Image by Arie Farnam

In two minutes, he’s back, the empty whipped cream can held up demonstratively. “Yup, she was squirting it into her mouth,” he says, confirming both of our unspoken suspicions.

I am grateful that he doesn’t care that much about canned whipped cream. One less bickering fight between siblings. I’m also impressed to see that he managed to get custody of the canister without physical injury… hopefully to either of them. The can is entirely empty, so she probably abandoned it to the chickens.

Confession

I’m going to write about life and parenting with a neuro-diverse child. There will be people who judge me for even mentioning children in my writing. The new thinking is that one should wait until they are adults and then ask for their consent before writing about them.

There will also be those who curse me for telling the harder side of living with a neuro-diverse person. There is a heavy push for parents to gush about how privileged and honored we are to parent this specific child. It comes after several decades in which parents of neuro-diverse kids were sainted and considered to be charitable saviors of mental invalids. Now the pendulum has swung the other direction, and we are required to abase ourselves in gratitude for a life that is in most cases still both physically and psychologically exhausting but also just part of life.

As usual, I am not much influenced by the trends. I am writing about this because there is a crisis in judgment of and pressure on families with neuro-diverse members. Services and educational adaptation are minimal and the vast majority of the blame for any difficulties is shunted onto families, who are almost always struggling as hard as they can to help those with neuro-diverse conditions survive and thrive in a brutally neuro-typical world.

Another reason is that once the years have passed, it is unlikely that I or anyone else will remember what these years were like. Middle childhood can be a very difficult period for many neuro-diverse children and their families. Most outsiders have no clue and are quick to jump to judgment when they see the outward manifestations. Even neuro-diverse adults often forget what the day-to-day reality was like. This is a world that rarely gets a detailed accounting.

For that reason as well, I will write.

Snapshot

“I want it! Now! Now! Now! I hate you! You’re the worst parents! I hate you! I want it! Please! Please! I’ll be good! I’ll be sooo good! I hate you! No! No! I want it!”

My nine-year-old daughter shrieks as my husband and I pull her out of the mall by gripping her upper arms on either side, careful not to injure her but firm in our refusal to let her topple displays or persist in a demand-based tantrum.

This was meant to be a quick stop for groceries but things have derailed. She is twisting between us, kicking at our legs with her sharp little princess heels, interspersed with frantic promises to be perfect and manic screeches of hatred. She turns to sink her teeth into my hands, but I am still stronger and quicker than her. I shift my grip and deftly avoid the bite.

The meltdown was most directly sparked because she saw the round pink globes of LOL dolls in a toy store window and insisted that she must have one. These collector’s dolls come in opaque round packages. You cannot tell which one you’re getting. That apparently is the fun in it or maybe just the profit in it for the manufacturer. They are only a tad more complex than the toys in a Happy Meal but they cost a solid $25 per secret package where we live.

My husband and I aren’t impressed by the dolls in the first place and we generally don’t buy toys for the kids during random shopping trips, let alone anything that expensive. Her name day is coming up in a few weeks and I suggested that she could ask for one of these dolls for her name-day gift. That started the whining, yelling and kicking, though it was still at a somewhat subdued wheedling level and was mostly directed at Papa, who is more amenable to impulsive purchases than I am.

But he has been practicing sticking to his statements with her and he had already said no. He repeated himself more firmly and that sparked the all-out revolt.

We finally pass through the automatic doors of the mall and my husband releases her arm, apparently assuming that she’ll stamp her feet, sulk and eventually recover. But instead she wrenches her other arm out of my grip and spins toward the doors with lightning speed. I catch her round the middle, glad that I’m still relatively agile. My husband turns, slower to react and stares. Then she tears herself away from me and sprints into the parking lot, across lanes of traffic, heading in a straight line away from us.

“Get the car!” I yell over my shoulder and dash after her.

I’m very nearsighted and I dare not let her get too far away, but I know that the only way we’ll contain this situation is if we can get her in the car. She reaches the end of the parking lot without slowing down and disappears through a line of shrubs still a hundred feet in front of me. I break through the shrubbery and find myself on the exit ramp of a gas station.

I don’t see my nine-year-old as I dash across it and come around the pillars of a giant gas station sign. There is another line of denser shrubbery behind it. I run past it but then turn, real fear hitting my breathless body as I survey the gas pumps and cars. There are now many directions she could have gone and I can’t see any sign of her purple shirt and turquoise mini-skirt.

Fortunately, I’m seriously winded by this time though and my feet don’t carry me far beyond the shrubs. I hear a tiny noise and spin to see her crouching low under the branches. She stares for a split second before she leaps away and that’s all it takes. I grab and latch onto her arm with an iron grip. I pull her back around to the exit ramp and my husband drives up in our car, which is something between a hatch back and a mini-van with sliding doors in the back. He opens a door from the inside and I wrestle our struggling, screaming daughter inside.

No one appears to have noticed and I’m momentarily torn between relief and cynicism, considering that to any bystander the scene just played out looked exactly like the classic Hollywood portrayal of a child kidnapping.

Creative Commons image by Jeffrey Kontur

She is still screaming and kicking in the back seat. We can’t stay on the exit ramp with cars behind us, so my husband drives two blocks to find a place to pull over, so that we can wrestle her into her seat belt. She seems moderately calmer and we reiterate that she can ask for a toy for her name day but she will not get this toy today or anytime soon, due to her current behavior.

We have to keep going. We’ve had dinner and it’s nearly bedtime. If she doesn’t get into bed at the right time, she will meltdown in the morning and not get to school and then someone won’t get to work. “Just wait them out” is almost universal parenting advice. It’s meant well but it often doesn’t work in the real world.

We get back into the front and my husband pulls the car onto the freeway. It seems unlikely that she could actually plan this, but as soon as we’re in heavy traffic she starts up again, kicking my seat and hitting her brother, yelling insults at him. I reach back and seize her hands, keeping her from physically tormenting the seven-year-old.

By this time we’re on a freeway bridge and there is nothing more to do. I meet his eyes and talk in a low, calm voice under the screeching.

“I know this isn’t fair. I’m sorry. I need you to be a big kid and be calm,” I tell him. I explain that the nine-year-old is having a really hard time and has a problem in her brain that makes it very hard for her to regain control. She screams insults and bullying names at him and starts to cry a bit. I hold him with my gaze and he keeps his hands away from her.

By the time we reach the next exit, she is a bit calmer. We discuss stopping in low tones but it won’t help. She will see it as power if the whole family has to stop and wait. Both my husband and I are still relatively calm and this alone is a major victory. We have managed to keep our cool despite a pretty extreme scene.

I lay out the consequences of further physical attacks to the nine-year-old, while still containing her hands. I don’t kid myself that this will have much effect. When she’s in this kind of state, her ability to process cause and effect is nearly nonexistent.

Even so, she is quiet enough that I release her hands, which turns out to be a mistake. She seizes the nearest hard object, her large plastic doll and throws it at my husband’s head. Since he didn’t take that exit, he’s wrestling with a snarl of fast, big-city traffic. I mange to knock the doll aside so that it hits the headrest instead of his head and falls onto the seven-year-old.

I give him a quick apology and make a left-handed sweep of the back seat, removing every hard object I can reach that she could throw and piling them at my feet in the front. She’s screeching at top volume again, hurling most of her insults at me and Papa. The seven-year-old has flattened himself against the door on his side.

I turn back to the front and check to make sure that my husband is undisturbed while driving. The small shocks of her feet slamming into the back of my seat irritate me, but it is mostly the greediness of her demand for immediate toys that makes me seethe with anger inside. I am hanging onto my calm by a ragged thread.

I spare a moment to think about parents with other types of disabilities and single parents. What if my husband was driving alone with them when this happened? What if I didn’t have above-average physical strength and speed for a woman or what if my eyes were just a bit worse? The thought of the judgement of people who would see us and think we were being overly harsh and that we should somehow magically find a way to handle the situation with grace and sweetness fill me with disgust.

Then the seven-year-old cries out a warning and I turn just in time to fling up a hand as the nine-year-old launches her booster seat, which she has managed to get out from under her, at my husband’s head.

I don’t catch it and she seizes it again when it falls. She draws back for another throw.

“Don’t!” My husband’s strangled voice indicates that he’s struggling with a major freeway interpass and he can’t even have me twisting in my seat and waving my arms around. I hold my hand up grimly, ready to take whatever she has got to keep it from hitting the driver in the head.

Exhaustion

Every day is exhausting and hard. Some days I feel like I'm in a war zone. 

I don't say that lightly because I worked in war zones years ago. At the end of the day my ears are ringing, my vision is fading in and out and I am staggering on my feet. Every inch of my body aches and my shoulders and cheeks are bruised from blows. My husband's face is blank and his eyes are glazed after only being in it for a few hours after work. My son lies in bed in a fetal position. 

The screaming hurricane is finally down at nine in the evening but we don't have a glass of wine and watch TV. I don't write on evenings like this. We just totter off to bed, separately, sometimes without even a word or a touch. 

It isn't every day but it is like this most days.

I recently read The Little Monster: Growing up with ADHD by Robert Jergen. The author, a man with severe ADHD and auditory processing disorder (the same categories of disability as our daughter), describes growing up in a fog, unaware of many of his actions, unable to remember what happened, what he said, what others said, moment to moment. He wasn't just in trouble. His parents, even used to four rambunctious boys before him, were desperate. 

I listened to it as an audio book on a rare day at home alone while my husband was out with the kids. During the portion of the book focused on Jergen's childhood, I gritted my teeth and muttered angry words at him and sympathy for his parents. The book does a good job of helping the reader understand his experience and he didn't describe his parents nicely, but I knew what it was like for them.

He did accurately describe the endless hurricane of chaos, destruction, obliviousness and carelessness with which he filled their home. He was the youngest of five boys, so it is possible that his presence wasn’t as all consuming as this hurricane is in our home.

Here there is often only one person who is allowed to be human on many days, only one person who is allowed to have needs. Nothing and no one can exist beyond her when she's in meltdown. And yet it isn’t her fault any more than my bad eyesight is my fault. And in rare quiet times, she promises to try not to be a hurricane.

Jergen writes that he believes everyone in the future will hope their children have ADHD. That is the only thing in the book that is truly wrong and infuriating. I have great sympathy for him and honor his experience and his admirable truth telling about having these disabilities, but the truth is also that he has never parented a child, let alone a child with his type of disabilities. 

I am glad for the hope that at least someone with these types of disabilities has found a measure of happiness and independence as an adult, though it is clearly noted that Jergen tested as highly intelligent on standardized tests even as a child and many children with these disabilities do not.

As a person with a significant visual disability, I know all too well that adaptation can be done and yet that it takes a great deal of mental resources. I have watched the vast majority of blind and visually impaired adults sink in to poverty and isolation, while I battled my way to a life with a family and a middle class lifestyle. 

Some kids with ADHD are also very intelligent, just as there are people with autism who are high functioning with genius-level intelligence. That has, in fact, become a kind of stereotype for ADHD, but it isn’t actually the norm.

Those people with disabilities who get a voice to speak about their experiences are those with abnormally high intelligence who manage to find coping mechanisms. They are not the ones who are destroyed and sentenced to failure. poverty and the astronomical ADHD-in-prison statistics. Coping mechanisms may be beyond the reach of many.

Snapshot

The house is a disaster. There are toys and clothes scattered all over the kitchen and hall floors. The kitchen is piled high with dishes. I’m cooking two major meals at once because the next day is jammed with doctor’s appointments and school events for kids.

My seven-year-old gets up from the early lunch I heated for him and goes to get his own backpack ready for a soccer tournament. I call out items he shouldn’t forget and I manage to fill his water bottle in between stirring veggies on the stove and putting breakfast things back in the fridge.

I put a kiss on the top of his head. I know there are benefits to hardship and having to be moderately capable at almost eight will put him ahead of his peers in many ways. But it still makes me sad that he gets no more than this hurried send off for the first soccer tournament of the season. All the other kids have devoted parents cheering from the sidelines at every game.

But it isn’t going to happen for us. For now I’m just grateful that the nine-year-old is letting me cook very briefly. She is actually doing something nice for once. I put the box of washable kid-safe paints where she can access it near the drawing supplies, and she has the contents spread out by the fireplace. Hopefully she’ll paint and I’ll get thirty minutes of cooking done.

Creative Commons image by Dylan Parker

On my way to the freezer I walk by and notice that she has opened every single color of the washable paints, which are used not just by her and her brother but also by my ESL students. I stop to make a quick check and find to my dismay that the damage has already been done.

Every single color has been squeezed out of the bottles into a plastic large container and she now has a half gallon of dark gray paint. There are dregs in the bottoms of a few bottles, which she didn’t squeeze hard enough but mostly the paint supply—at least $50 worth—is gone. That is the price paid for the last twenty minutes of uninterrupted cooking.

Snapshot

“I don’t know that letter! I don’t know it! Let me go! No! No1 No! I won’t do it! I don’t know how to read!”

The nine-year-old is throwing a tantrum because she momentarily cannot remember the sound made by the letter A. She can actually read, though dyslexia makes it a struggle. But her short-term memory issues, a common part of ADHD, makes it so sometimes she truly cannot remember the sound of a letter.

The bigger problem is that she knows this happens and she is not above pretending to have such a memory attack in order to get out of homework. My husband is close to tears and this has only been going on for one hour.

The day is yet young at 5:00 pm.

By 6;00 pm they have switched to math, giving up on today’s reading assignment. Dinner is ready and I take over from my husband.

“How in the world am I supposed to explain algebra to her?” he fumes at the textbook. The problem reads 42 - ? = 14.

Our nine-year-old can—on a good day--just barely work out 42 - 14 = ? with help. But my husband never needed to work at math as a kid, so he doesn’t remember how you get from that to the real problem. I wasn’t as good in math and I still remember the agonizing steps.

I spend the next two hours trying to coax her into the basics needed to get to where her classmates are, while she screams and thrashes around on the floor.

Snapshot:

I have to get to physical therapy as soon as I get the kids off to school in the morning. I prepared extra well the night before, so all I have to do is slip snacks and water bottles into their backpacks.

The nine-year-old insists on wearing leggings with half a dozen holes in them and a halter top even though it froze last night and the forecast is chilly. I know the judgement I’ll get and I force a long-sleeved shirt on over her halter top, even though I know she’ll just take it off. I can’t physically get the halter top off of her with out injury to one or both of us.

She starts screaming ten minutes before it is time to leave for school and she continues well past the time they usually leave. I let the seven-year-old go on his own. She seizes a log off of the woodpile and hurls it against the glass back door of the house. The glass doesn’t break but I doubt it can take much more.

I open the door a crack and tell her to stop hitting the glass and go to school. She grabs a longer piece and tries to strike me with it. I close the door and it lands against the door jamb. I open it a crack again and tell her that every time she hits the door she will lose a day of television privileges. We’ve been through this before.

I count fifteen strikes of logs against the glass before I leave by the other door, locking it behind me. She comes raging around the house, screaming at me.

She still has some nervousness about getting in trouble with her teacher. I tell her that she will be late for school at this point but if she goes right away she will not get in big trouble. It makes no difference. She continues to rage and scream, her face covered with snot and her hair stringy at the sides.

There is no waiting it out. I either have to leave or I will miss an appointment that took six months to get. The irritated doctor, who didn’t believe me the last time I postponed an appointment, might not even allow me to get another.

Snapshot

I whisper “Good morning” into the children’s ears as the first streaks of dawn make silver in the east. They need time to get up slowly. Given that they have to walk to school because I can’t drive, we rise pretty early here.

I turn on lights, scratch and rub backs, exchange a few words with the seven-year-old and smile noncommittally at the pretend baby talk of the nine-year-old while I give her a reassuring hug and kiss. Then I go down stairs to get snacks and vitamin supplements ready.

“She’s in Papa’s room messing with his office!” the seven-year-old calls down a few minutes later.

Yesterday, she climbed up on the stove to get candy out of the stash on the shelf just below the ceiling and then refused to eat any dinner because she already had her sugar fix. She took non-washable dye and hid it in her room when I did an art project with her and then lied when I was looking for it. She got into my room and made off with my phone and my scissors.

I have to go to physical therapy again this morning. In a flash, I am so angry I can’t think straight.

I run up the stairs and pull her away from my husband’s desk, where she is rummaging. I take her downstairs and my voice cracks with strain as I demand that she tell me what she was doing, what she had taken or what she was looking to take. I am pretty sure it is either sweets, money to buy sweets or something electronic she wants to distract with at school.

She refuses to say, as usual. She doesn’t tell the truth anymore the way she once did. It is hard to blame her, since she often gets in trouble and now is often accused of fibbing.

My voice cracks and I start yelling, shattering the peace of the pink-tinged morning. My voice is hoarse and scratchy for the rest of the day and I feel like a bad parent for ruining the morning for everyone.

I am too tired, too worn out. I am sick and tired of lies and commercial demands and unkindness.

Judgement:

“You just have to give her some positive reinforcement.”

“Well, you know ADHD doesn’t really exist. It’s just something they say to excuse lazy parenting.”

“I know what it’s like. My kids are all really active. They’re great in sports. You should get her playing sports.”

“It’s about diet. I’ll bet you always eat out at McDonald’s”

“I’m sure it isn’t really that bad. And she’ll probably be a genius in art or something.”

These are all real statements that people have said to me in just the past month. Neuro-diversity is terribly complex and you’ll never find another child exactly like mine. Some neuro-diverse children are exactly the opposite. There is no way that most people can truly understand people with hidden disabilities.

But there is one thing that everyone should know that would actually help neuro-diverse people and their families. That is that hidden disabilities are real and they are very difficult to deal with. Assume you don’t know.

And don’t judge.

My child and my whole family eats a more healthful and careful diet than 90 percent of the population today. My child gets lots of exercise, taking multiple aerobic dance classes, walking too and from school and bouncing a giant trampoline most afternoons. It isn’t “all in the diet” or “lack of exercise.”

It’s a disability. It exists and it appears from the outside like a very bad, very spoiled child. Our walls are covered with more reward charts than any household I’ve ever seen. I have studied and tried dozens of strategies and parenting styles.

Most work fine with my seven-year-old. He is known for being a very active and even a “wild” boy but he doesn’t have ADHD. None of the parenting techniques actually “work” with my nine-year-old. A few help a little.

i used to think I could tell if a child was being parented well by observation. I now know that I can’t. I wish I had been able to learn to be less judgmental in an easier fashion.

Exclusion: The abled-privilege knapsack

Shutting down "the privilege Olympics"  should not be code for "screw the disabled"

You too are wearing an invisible knapsack. 

In 1988, Peggy McIntosh explained white privilege in terms of an invisible knapsack filled with unearned benefits and assets that white people carry with them almost entirely regardless of class, economic status, citizenship or other conditions.

It's a good analogy. I am now much more aware of my knapsack of white privilege and I can observe the effects of its contents on a daily basis. 

I have never seen a similar analogy used to describe abled privilege, but it is time someone did. In the last few years the necessity of acknowledging abled privilege has been shoved in my face ever more frequently. Even in social justice circles where such things are typically read, people with disabilities are continually being marginalized and silenced.

Creative Commons image by Woodleywonderworks

It is worth noting from the beginning that people carrying the white-privilege knapsack but not the abled-privilege knapsack or visa versa might well enjoy some of the benefits of the one they do hold, but there are assets in both of these knapsacks that are very difficult to enjoy if you don't have the corresponding assets in the other knapsack.

So, as a white woman brought up to be aware of white privilege, I can pick out instances of white privilege that I enjoy. These are not so much unearned privileges as they are privileges earned by every human but accorded only to those who are white--the privilege of driving or walking without a well-founded fear of being accosted by law enforcement for trivial or non-existant reasons or the privilege of relaxing into a social situation in which my race and culture is in the majority most of the time.

Having children who are not white has taught me even more about my own privilege and a few privileges I gave up by being part of a racially mixed family, such as losing the ability to shelter my children from the societal realities of racism and the very real dangers they face because of it. 

However, there are some assets in the white knapsack that I have pulled out broken or severely dented because of my disability. Unlike most white people, I am beset daily by the assumptions and prejudices of others, both unconscious and conscious. I rarely to through a day without being yelled at in public and someone pushes my "difference" in my face at every turn. 

I was once told explicitly that I was denied a job that I was qualified for because of my disability and I have wondered about the reasons behind many other rejections. I have faced social isolation, rejecting neighbors and hostile school teachers as well as accusations of stealing in stores.

I do not claim that it is the same as what people of color face. In fact, I know it is not the same. But people of color who are not disabled do also enjoy privileges that I cannot.

Please note that this inventory has very little to do with the actual health problems people with disabilities may have. It has everything to do with society’s reaction to and ultimate rejection of us. The benefits of privilege represent the minimum of respect earned by every human being from birth and this is true of abled privilege as well. It is our right to be treated with respect and dignity, to have opportunities and to be judged by our actions rather than by attributes we cannot choose.

So, here is an inventory of the abled-privilege knapsack with some prompts drawn from McIntosh's essay and the writings of Emestine Hayes.

Creative Commons image by Honza Soukup

If you are temporarily abled, you are wearing an invisible knapsack and in it you will find:

• You can, if you wish, arrange to be in the company of people who view your physical body and neurological setup as normal and acceptable pretty much all the time.

• You can turn on the television or open to the front page of the paper or open a random Google search and see people of your shape or appearance widely represented.

• You can easily buy posters, postcards, picture books, greeting cards, dolls, toys, and children’s magazines featuring people that look vaguely like you.

• Your body shape is reflected in media, movies, books, magazines, online and in most people's imagination as good and capable, even if sometimes not perfect. As a result, while you may have insecurities or anxieties about your looks, they are not a barrier to social interaction.

• Beauty, handsomeness, masculinity and femininity are personified by people of your general appearance and body shape. 

• You can be fairly sure of having your voice heard in a group, even if most of the group has different abilities, body shape and speech from yours.

• Authority most often rests in people who look like, speak like and perceive the world like you.

• You do not need to make an in-depth study of the social habits and customary communication methods of your immediate neighbors in order to avoid daily conflicts of misunderstanding and unintended offense. 

• You can criticize the government and talk about how difficult it is to access basic services without being seen as a moocher, a whiner, ungrateful or a burden. 

• You can go home from most meetings of organizations you belong to and social gatherings you attend feeling somewhat tied in, rather than isolated, out-of-place, rejected, unwanted, unheard, barred at a distance, or dismissed.

• You can attire yourself, if you choose, in a way that most people in your community seeing you and hearing you speak will assume that you are capable, responsible and trustworthy until proven otherwise. If you happen to belong to a group where this is not always true, a community of people who do look and sound like you and where you would be respected and trusted does exist somewhere in the world. Even if you don't live there, the knowledge that such a community exists bolsters your courage and self-confidence and in most cases you could move to such a community if outside pressure became too intense.

• People make eye-contact with you and you are able to make eye contact with them. People make small-talk with you and you are able to make small talk with them. This initial social contact often leads to social connections, builds bridges and defuses potential conflicts. 

• While you may have been teased at school, your chances of suffering from extreme bullying or complete social isolation in childhood are dramatically reduced. Your chances of suffering from PTSD and other acquired barriers to communication with others are significantly reduced.

• Teachers at schools and universities almost always look like, speak like and perceive the world like you do.

• The vast majority of students and teachers all through the education system sense the world, communicate and access textual materials in the same way that you do.

• The entire education system is custom made and designed with scientific precision to benefit your type of brain and calibrated to meet the needs of your particular senses.

• The language and writing system of your culture was designed by and for people who communicate and perceive language in the same ways that you do.

• Public buildings, including schools, were built using models of your body, to make them comfortable and easily accessible to you.

• You have probably not been called a burden. You were not called a burden to your school while you pursued your education.

• If you are denied employment for which you are qualified, you can be pretty sure it isn't because of an attribute you did not choose and which does not affect your job performance.

• If you are given an award, you can be pretty sure it is something you deserved rather than a publicity stunt by the patron of the award. 

• You can take a job with an affirmative action employer without having co-workers on the job suspect that you got it because of disability hiring incentives.

• If your day, week, or year is going badly, you need not ask of each negative episode or situation whether it is disability related.

• You can choose public accommodations without fearing that you cannot enter or will be treated with disrespect in the places you have chosen.

• When you plan social engagements, your way of getting to and into the venue is the same as that of most of your friends and you don't need to strategize, beg for assistance from friends or go to extreme expense to get to or enter the social venues your peers take for granted. 

• You can always ensure that your living, schooling, work and or social environment will be among people you can communicate with and among which you will be considered "normal" if you desire.

• You can always find a living, schooling, work or social venue that you can physically access and fully participate in locally if you desire. 

• If you should need to move, you can be pretty sure of renting or purchasing housing which you can afford and which you can personally enter and use fully and from which you can get to schools and places of employment.

• You can be pretty sure that your neighbors in such a location will view you as a full adult, if you are over 18 years old. .

• You can go shopping alone most of the time, pretty well assured that you will be able to access merchandise and that a reasonable portion of it will fit you and be usable by you.

• Whether you use checks, credit cards or cash, you can count on not being infantilized, shamed or dismissed by cashiers and other people you interact with in public..

• You can arrange to protect yourself from harm most of the time.

• You are twenty percent more likely to finish high school than a person with a disability who has similar intelligence. You are twice as likely to finish college.

• You are at least three times as likely to have any sort of job than a person with a disability and much more likely to have a job that is of some interest to you, that provides some social prestige, that pays your bills and in which you can progress for a career.

• You are half as likely to be hungry as a disabled person. 

• You are a third as likely to be a victim of sexual assault and half as likely to be a victim of violent crime as a person with a disability from a similar social or economic group and geographical area. You are half as likely to be a victim of domestic violence.

• You are twice as likely to have family and friends nearby or who you can contact in an emergency. You are likely to have a circle of friends to enjoy leisure time with and to network with for mutual benefit.

• You are twice as likely to have a long-term relationship. You are many times more likely to have children.

• You can swear or dress in second-hand clothes or not answer letters without having people automatically assume these choices indicate low intelligence, shaky mental state or poverty.

• You can be temporarily out of work or sick without being called a burden or assumed to be unemployable.

• You can do well in a challenging situation without being called "an inspiration" or used to further the religious or social agendas of others without your consent.

• With education and credentials, you could become an an acknowledged expert on people who look, speak and perceive the world differently from you and you would not be asked why you did not choose to study your own group.

I am sure I have missed some. It's a large knapsack after all. 

This is one of those posts that will inevitably draw flack. It isn't that I don't care. I have simply decided that the amount of verbal shrapnel I'm getting in "progressive" circles these days for being an uppity person with a disability has reached a point where the potential flack from this post won't be a significant change. 

So let me lay it out there. I am sick of the dismissal of people with disabilities in activist circles. I am sick of being told, "you are white so you need to practice being silent for a while," when I have been silenced, dismissed and sidelined my entire life.

I am sick to exhaustion of being excluded, rejected and sidelined in supposedly progressive groups because I didn't take an insult or bullying in silence and answered back withotu profanity, without insults but nonetheless with unpalatable truth. . 

I get what people of color, indigenous people, speakers of languages other than English and people living in absolute poverty are talking about when it comes to wanting those with privilege to stop yammering about their perspective on society, their perspective on history, their perspective on underrepresented people and their perspective on social justice long enough to listen to the perspectives of those less heard.

I get it because while I have the privileges in the white-privilege knapsack, the English-speaker's knapsack and the resources-beyond-bare-survival knapsack, these are usually not enough to be heard without abled privilege. 

This is not "the Privilege Olympics." It is not a matter of whose usurped privilege is worse. It is almost always so different that it cannot be compared. Still mentioning "the Privilege Olympics" or equivalent is routinely used to dismiss and marginalize people with disabilities in activist circles.

We have huge, life-threatening threats to people of color. The crises for people of color are so extreme in some places that there can be no other priorities or even distractions.

Many of us, myself included, have agreed to this, stepped back and ceded precedence because while there are life-threatening and devastating issues for people with disabilities as well, the numbers seem to indicate that our problems are at least statistically less severe. We activists with disabilities have often felt that we can wait a little while and trust that our progressive activist communities would do their best to include us in the meantime. 

But that trust has been misplaced. 

Not once but again and again. Not only do people with disabilities encounter a lot of social exclusion, bullying and discrimination in society at large, we encounter much the same atmosphere inside social justice organizations and groups claiming to be against bigotry and hate. 

My experiences and the experiences of those I have spoken with are clear. People with disabilities are welcome in these groups primarily as mascots or symbols. We are not respected for in our fields of expertise and study. We are often silenced and rarely given a voice. 

I've been told that my voice and experience are not welcome in progressive and social justice groups on multiple occasions. Usually this was not specifically because of my disability but rather because of my race. I was told that as a white person I am privileged and my role is not to speak. As a blind person, however, given that no other people with disabilities were present or given a voice, I felt that our voice was needed. 

I have been rejected quickly from several groups when my politely phrased protestations against being silenced were regarded as going against group authority. I never used profanity or insults against others in my responses. I did not talk over others but only refused to be entirely silent.

For that reason, this inventory of the abled-privilege backpack is necessary. I welcome any additions that others may find while rummaging through it.