Jess Banks schools you.

Our rental managers at Como Park Apartments stepped up to offer day-long activities for the apartment complex’s kids when school closed this week. This came as very welcome news, as our car remained resolutely opposed to starting in the sub-zero temperatures. Big-hearted community efforts like this keep us here when, to be honest, we could use a little more room—there just isn’t anywhere else with neighbors and management who give each other such close-knit support.

Monday was grand, and the DH and I got loads of work done while the boys played the day away at the party room. They came back with tales of new friends and pizza-sauce stains on their faces. Tuesday seemed to be headed the same way, but at 2, my cell phone rang. “I need you to come down,” our neighbor said. “Connor’s having a meltdown.”

When we got there, he was sitting in a corner with two of the staff who were talking calmly despite his sobbing. I helped him up and hugged him tight, despite his wet swim clothes, then convinced him to come sit with me so we could talk more easily. I held him until his breathing and tears slowed, then we started to dissect the series of events that left him so upset. A scare from some horseplay in the pool, combined with embarrassment over his friends seeing him cry, kicked it off. But it was the clever liar of depression that told him everyone hated him, that he was a waste of space, and he should just die.

While it was good that the DH and I were home so we could reach him quickly, the neighbors and staff had done everything exactly right. That’s far from guaranteed when it comes to folks who don’t deal with autistic or mentally ill kids every day, and I wanted to take a moment to write about what they did and how it might have made the difference between a bumpy patch and a potential disaster.

First, the adults recognized that he was starting to meltdown. In my experience, this looks different from a regular episode of angry or sad crying; instead of falling apart, getting limp, or long wailing, a kid in meltdown usually winds tighter, with shallower breathing and critical self-talk in an escalating pattern. They may lash out at people who try to get close, or even throw things, but they’re generally not interested in hurting anyone but themselves. The best case scenario is to derail the meltdown, and distraction is the best way to do it. Give the kid something to play with, like a fidget or craft—one friend kept knitting in her bag when she worked with a child who found the motion soothing. Strike up a conversation on a common interest, ask questions. If they’ll accept a hug or something heavy for some comforting pressure, that helps too, but it’s rarely the right move to force physical contact.

If you can’t de-escalate, safety is critical. Thoughts that hurt as much as the ones that bubble up in meltdown make a person want to flee, and they may bolt for the door, or try to hurt themselves, or both. Connor had been in the swimming pool, and tried to drown himself when his self-loathing got so heavy so fast. Once they had him out of the water, he wound his scarf around his neck; they got it away from him. He ran to the far end of the balcony, and they sat with him. Location, tools, and support—they had the bases covered.

Third, they stayed calm. Kids in meltdown are loud, and sometimes they’re saying things you don’t want to hear: dark things, angry things, scary things. The temptation to talk over them, to force reason atop their disorder until both of you are screaming, is powerful. But it doesn’t help. Even your silent presence, steady and resolute if non-communicative, is better than pushing them toward a brink they might not otherwise approach. Mostly, they just need to spill. Don’t silence, don’t argue—the storm will blow itself out if it’s not being fed.

We’re grateful for many things on the good days, but sometimes a bad day turns up a cause for thanks too. I can’t say enough good things about the compassion and quick-thinking our neighbors showed in a situation that’s hard to manage even with years of experience. The same factors, managed with indifference or inattention, could have yielded tragedy I can’t bear to think about. Every parent knows that sending a kid out into the world on their own is to live with your heart beating outside your own chest. Having the right understanding of a meltdown situation can equip you to handle other people’s hearts and children with care.

I knew Griffin had a bad day by the way he walked in the door after school Monday. Slow shuffle, hangdog expression, sad sad puppy eyes. “Rough day?” I inquired gently. He nodded, took his folder out of his backpack, and handed it over without a world.

I wasn’t surprised by the discipline slip. But I was absolutely flattened by what it said: “Griffin called another student the ‘n-word.'” I felt a wave of horror and nausea that it’s difficult to describe, which can’t be anywhere close to  how it feels to be on the receiving end of that slur.
“Griffin,” I demanded, “what n-word did you call someone?”

Eyes filling, lower lip trembling, he sobbed out, “NOOB!” before dissolving into a mass of tears and remorse in my lap.

I had to restrain my reflexive laughter in that moment, but I held him away from me for a second. “You said noob?! That’s what this is about?” He nodded, and collapsed against me again. I stroked his hair, and told him we’d get this straightened out, that “noob” isn’t really a bad word, though calling anyone any name isn’t a nice or friendly thing to do.

I went on to question him from a half-dozen oblique angles over the next half-hour, trying to figure out if he even knew the actual n-word. The kid isn’t above trying to lie to save his skin, but he’s pretty terrible at it, and the look of blank incomprehension at my suggestions were more telling than anything he might’ve said.

Finally, I asked him quietly, after a long silence, “Griffin, have you ever heard the word ‘nigger’ before?” He frowned and shook his head. After a few quiet moments, he asked in a whisper, “Is that the bad n-word?” I nodded and said, “You cannot ever, ever say that. It’s the most hurtful word there is.”

I got in touch with the school, seeking resolution. The staff and teachers there are outstanding, and they know the DH and I as the first line of enforcement when there’s any kind of behavior issue. We’ve been unfailingly cooperative, and they’ve been unfailingly kind and loving toward our kids. When we went in to talk this over with the principal and the cultural specialist, I expected that they would’ve found what we did.

But they said they’d questioned the kids present at the incident, and several of them said that Griffin did, in fact, use the real n-word, including one of Griff’s buddies, an African-American kid who couldn’t even say the word aloud when asked.

There is nothing about this incident I don’t hate to the core of my being. I hate that I cannot reconcile what I saw in Griffin when I talked with him about the name-calling, and what the school’s investigation found. I hate having to mistrust his narrative. I hate that I don’t think this will be able to be one of those funny stories we laugh about in the decades to come.

I hate that I was forced to speak a word to my child that I would never, ever say for any reason. I hate that someone might have already introduced him to it–maybe through a YouTube video of game play, maybe on the schoolyard.

I hate that I have to talk to a seven-year-old boy about racism in specific terms. I hate that the fact that he has more friends of color than white friends apparently didn’t protect him from this kind of violence. I hate that he may have made one of those friends aware of his own race and the sickness of heart that comes with it.

I hate that my personal and our family’s real lived values about equality and kindness frankly don’t count for anything in this situation. I hate that this happened in the middle of the most intensive racial equity work I’ve ever engaged in, work that’s made me feel like a soft, naked thing in a world of hedgehogs with quills of bias and bigotry and privilege that constantly draw blood on my aware, exposed heart.

I hate that I don’t know how to be a good parent in this situation. I hate that apparently, I haven’t known how to be one for longer than I imagined.

I’m participating in an intensive series of workshops on race called Beloved Conversations. It’s being hosted by a local Unitarian Universalist church, but it involves members of several other UU and African-American churches as well. The workshops have included large and small group conversations; the building of a series of timelines showing important racial/ethnic events of our city, our congregations, and our personal lives; and other activities.

So I wasn’t surprised when we were asked to line up for a Privilege Walk at Saturday afternoon’s session. In this exercise, people start in a straight line before being asked questions about advantages and disadvantages they’ve had in life, many of which are keyed to social privileges we receive by virtue of our birth. For advantages, participants are required to take one or two steps forward; for disadvantages, one or two steps back.

Different lists are more or less focused on racial privilege, but the one we used Saturday was more inclusive of gender, sexual orientation, socio-economic status, and disability. As people fan out, patterns become undeniable: mostly white men at the front of the room, followed by men of color, then white women, and women of color at the back of the room. I’m used to being in the back third of the room, where white women from poor families and more advantaged women of color merge.

What I didn’t expect on Saturday was to be dead last, by one or two steps. It was just a function of the questions, not a significant worsening in my circumstances since the last time I did a Privilege Walk. There weren’t many questions about the advantages conferred by formal and cultural education, and the effort to include more forms of dis/advantage meant the hits just kept on coming.

Own stock or a trust fund in your name before age 21? Take a step forward.

Identify as lesbian, gay, bisexual, or transgender? Take a step backward.

Given a car to drive yourself to high school? Take a step forward.

Have a visible or invisible physical disability? Take a step backward.

One or two paychecks from being broke? Take a step backward.

Told you are handsome or beautiful by complete strangers? Take a step backward.

It’s not that I didn’t take steps forward—I know my privilege. I’ve traveled, I’ve studied, I’ve received gifts from my parents and my race that benefitted me directly. But I felt a sudden, visceral solidarity with the women of color with whom I stood, and I admired their strength in the face of the challenges that put them there too. And as I stood there, looking at the backs of the other participants in these deep, meaningful conversations, I was filled with anger and helplessness at the accumulation of injustices that put me where I am.

It wasn’t even the first time this weekend I’ve felt profoundly alone in a room full of people I know. I attended the TakeAction Minnesota gala celebration Friday night. The three people I’d invited to join me ended up missing the event for a variety of reasons. While I literally couldn’t walk through the crowded social hour without bumping into someone I consider a friend, and I gave out as many hugs as I collected donation envelopes during the fundraising portion of the program, I was seated at a table of strangers, with other strangers at all the proximate tables. I whooped and hollered, stood and clapped, all throughout the program as beloved friends and fellow organizers paraded across the video segments and stage, but I felt it necessary to apologize for my enthusiasm to people who had none of the same connections in the room that I had. We weren’t celebrating the same year, and I felt isolated by my circumstances.

So there I was again, Saturday afternoon. Two members of the group noticed the silent tears streaming down my face, and each came over to hold me as they turned to quiet sobs of frustration and humiliation. Another took a few lateral steps to hold my hand throughout the rest of the discussion. Other participants who’d executed that awkward box step of advantage and disadvantage with me at the back of the room argued that the questions posed didn’t reflect anything beyond socio-economic values for privilege, while those at the front of the room grappled awkwardly with unasked-for entitlement and “luck” that attached to the chance of their birth. And one beloved friend argued that we at the back had an invisible advantage, that we were “all Cinderellas”—we belong at the ball, but we have a deeper reality we can return to, one that gives us a greater appreciation for those occasional invitations to the dance.

This might all come across as another white woman whining about her taste of the unfairness that people of color—especially queer women of color—live with every day. Maybe that’s true. But after the tears dried and the hurt dulled, what was left was an even deeper commitment to tearing down the walls that keep those of us at the back of the room apart. We know more about each others’ struggles, despite the differences of neighborhood and skin color, than we do about what it’s like to be one of the people at the front of the room. We can be present and supportive for one another in ways that are deeply meaningful. We can see to each other’s representation in critical public discussions about our neighborhoods, schools, congregations, and democracy.

We Cinderellas gotta stick together.

I’m in the midst of a fundamental transformation, and it’s time for me to say to all the people whose rights I’ve worked to protect and expand:

I am not your ally.

This may come as something of a shock, given all the hours I’ve put in at phonebanks and lobbying and trainings and rallies. Yes, those are your bumper stickers on my car, your emails in my inbox, your scripts still invading the dreams in which I try to persuade talking dogs to call their legislators.

And no, I’m not giving up on activism. Far from it–I’m more committed than ever to bringing new people into the movements for safe schools, racial justice, gender equity, livable wages and housing, quality health care, and all the other things I care about.

But I’m not your ally anymore.

See, if I were your ally, I wouldn’t have a stake in these fights. I’d only be working for others; that work would have no appreciable impact on my own life. And it may seem like that to some of you who watch me flail around for the common good. After all, I married the person I love with no legal impediments. In fact, I even helped him immigrate, with no risk that he would be questioned or rejected or quota’d out of consideration. I’ve only had two, thoroughly planned pregnancies. I’ve been incredibly lucky to have reasonably affordable health insurance coverage for all but four months of my life. I’m white. I’m highly educated. I’m employed.

I am the veritable picture of privilege. So why can’t I be your ally?

I can’t embrace that title anymore because it’s mistaken. It suggests that I don’t benefit from the changes I help create. And that just isn’t true.

Better wages improve my economy. More affordable housing in safe, diverse, closely knit communities improves my family’s living conditions. Schools that foster the dignity and abilities of every child improve my kids’ education. The dismantling of the prison-industrial complex lifts an unfathomable burden from my society. High-quality, truly accessible health care keeps me alive. Environmental conservation preserves my planet, and by extension, the most sacred part of my soul. Broad civil rights for communities of color and LGBT people protect my own rights to vote, to speak freely, to exercise my most fundamental human aspirations. Autonomy, safety, and respect for women’s choices, bodies, and lives guarantee my own ability to live fully into myself.

I’m not an ally because your rights are my rights. Your liberation is my liberation. Your safety is my safety, and that of all I love.

I don’t know the word for what I am, but I am in this with you all the way. And I won’t stop working until we are all free and whole together.

UPDATE: A darling friend from church came up with what may be the correct answer to my dilemma: the word “ubuntu.” Archbishop Desmond Tutu defines it thus: “Indeed, my humanity is caught up in your humanity, and when your humanity is enhanced mine is enhanced as well.” You can read more of the interview that yielded that quotation here. Yes, I know it’s also a computer term, but apparently the name was chosen deliberately to claim that friendly, collaborative, interconnected effort. So, ubuntu, y’all.

Of all the readings I might have expected to be assigned during Weeklong, Thucydides (my old nemesis from History grad school) wasn’t one of them. Yet there it was, the chapter on the Melians, an island nation drawn into the Peloponnesian War, in our prep materials. Reading it in the context of how we act on our ideals in the face of a practical threat was enlightening, but I couldn’t see how it would apply to our training.

My confusion grew when I showed up at the first session Monday morning, and the group leader (Don, from the night before) asked who had participated in a Melian Debate before. Was this to be some kind of quiz in the form of a reenactment? I didn’t raise my hand with a few other folks who indicated this was new territory, figuring anyone who’s read that same passage at least five times before should fare okay.

Don lined up teams of four debaters, named them Melians and Athenians, then set them to argue their respective positions. The only rule, he told us, was, “I can interrupt.” He occasionally retired people from the line-ups and called new folks. Then he made the teams switch allegiance and argue the other side. Everything seemed like an academic exercise until he started sending people out of the room.

I wasn’t called until the end, so I sat there, half my brain trying to psychically will good points of argument to the various players, the other half frantically scanning for a pattern to Don’s interruptions. I couldn’t find one. People who hardly said a word were sent from the room. People who engaged ferociously for their side stayed for long minutes, then returned to the audience. No rhyme or reason.

Apparently, others started questioning Don’s calls too, because a group from outside the room came back in with the intention of disrupting the debate. They proposed sending an assassin to kill the Athenian delegation. Don responded by announcing that the Athenians start destroying Melian villages. The escalation of urgency drove both teams into ever more retrenched arguments, despite being increasingly uncertain what the end game or victory even looked like. Finally, Don called a halt to the exercise, about three minutes after I joined the Melians.

Then came the moral of the lesson: This wasn’t about winning or losing. In fact, the reenactment of the debate wasn’t the point at all. What really mattered is how we reacted to power–namely, Don’s power. The way we responded, individually and collectively, to Don’s commands revealed how we generally respond to people in positions of power. Almost all of us simply followed orders. We sat down when Don said to sit down, we left the room when he said to go, we grew agitated and desperate when he started giving “reports from the front.” None of us questioned his choices, and when a group did try to take back some control, they were disorganized and ineffective, ultimately still responding to the artificial emergency and not Don’s role in it.

We felt terrible. Because, deep down, we hated knowing he was right.

I didn’t find out as much about my own responses to people in power because I wasn’t called into things until the very end, but maybe that’s its own lesson. I tend to wait until I either see something that needs to be done, or I ask for jobs from people who seem to have a sense of the larger plan. When I’ve initiated my own plan of action in the past, I’ve been slapped down by people who don’t like a different way of doing things, or my take-charge attitude, or not vetting my plans according to the “proper channels.” And I’ve let those unappreciative responses intimidate me from being more of a self-starter.

People in power have absolutely no interest in making room for people out of power at the table, so you have to be willing to build your own power with other people until they have to take you seriously. We can’t wait for authority figures to ask our opinion, or sit down when they tell us to. For a room full of activists determined to buck the system and change the world, facing such undeniable proof of our less-than-commanding attitude toward power was an unwelcome Monday morning wake-up call.

I’m going to summer camp this year. Not as a parent or a teacher, but as a student at the Leadership Institute run by National People’s Action. This opportunity is dearly bought with the love and financial votes of confidence of many friends, as well as the perseverance of the Darling Husband, who’ll get his share of single parenting back from all those cons he’s attended for work over the years. And I’m determined to use this camp’s resources to level up my skills and be a stronger leader for the causes I feel strongly about. I know it’s going to be a challenging, agitating, soul-searching experience–I’m ready for that.

But today, I was faced with a view of my activism that I’d never, ever envisioned. A beloved friend suggested that I might be on the path toward the kind of activism that harms and terrorizes other people. And I found myself replaying all the marches, rallies, phone calls, planning meetings, training sessions, and conversations I’ve had. I searched them from the outside looking in, scanning for visions of myself as frightening, threatening, angry, or intimidating. And, of course, my vivid visual imagination got straight to work manufacturing reflections of past scenes or shadows of future selves in which I’m furious and self-righteous, intolerant of other viewpoints, but blind to the faults in my own.

But those pictures aren’t real, and the rest of my memories yield images I can’t associate with terror. I speak clearly and fearlessly, yet with respect, to anyone who’ll listen. I work hard, but I goof off too and distract my friends for a few laughs in brief downtimes. I sing, I clap, I chant, I dance. I’ve cried with both joy and grief in the halls of power and in the streets.

I don’t know how these things are scary.

I do have the clarity to see that parts of my activism might provoke a negative response in some people. I may appear to have a rigid sense of what’s right and little tolerance for other positions. My voice can be strident when I try to make it heard over those who try to drown it out. I’m not a small person, and when I raise a fist of power or link arms in solidarity with others, I probably look unmovable. I talk a lot about the actions I’m taking, because they take up a big part of my life. I retweet too much.

It IS radical, what I do. Maybe I should get used to that statement: I am a radical. I believe in radical things, like the worth and dignity of every single person on this planet, and the power of a single person’s action joined with others. I do radical things, like give my time and energy and voice to causes that do not directly benefit me at all, just because they seem worthwhile and I recognize the power that comes with my privilege. I try to offer radical acceptance to every person I meet, by acknowledging that every life is a journey, and we’re not all at the same place on the path at the same time–judging or criticizing another person for being where they are on their path accomplishes nothing.

The internal conflicts I weather as I work through the evolution of my beliefs and the consequences of my actions aren’t visible to most people, so I’m sure I seem like another cardboard cut-out liberal rabble-rouser. I don’t talk with everyone about why some causes get my attention and others don’t. Part of that is embarrassment at the inexplicable, emotional reasons for some of those decisions. I have internal boundaries among the issues and tactics of activism that don’t always come from a sensible place.

But I hope my primary motivations are clear as day: I want everyone to feel the same love and enjoy the same rights I do. I love learning and free will and self-determination, and I believe everyone deserves equal access to them. Because that’s what moves me, I’m categorically opposed to tactics designed to frighten or deprive anyone of something that’s rightfully theirs.

And here’s where I’ll make the only qualification in this whole screed: disproportionate political or financial power is not a right. Those are things you earn, and if you use them to take away the rights and freedoms of others, then you have to be ready for the same people who gave them to demand them back. If you’re the one in power, the idea of losing that position might be frightening. It shouldn’t be, because power over others isn’t a right, but nobody likes to lose control. I can empathize; I’m a control freak too.

But one of the founding principles of democracy and human rights is the power of a group of people to rise up peacefully, speak their piece, and create change in society. Sometimes, the language of this right is misappropriated by people who want to use that power to take away others’ rights (often, that exact same right they’re exercising). But the truly great moments in history largely correlate to times when individuals have stood up for their rights in the face of overwhelming disparity in power and force.

It takes guts and advice and practice and support to do that and not falter. It takes the sight of other people to the left and right of you, whether it’s in a parade or a phone center cubicle or a line of jail cells. That’s who I want to be for others who are fighting for a better world. That’s what I want to be trained to do. And if my faith and conviction in the possibility of change toward greater freedom makes  someone feel afraid of me or bad about themselves, all I can do is say that I love them and where they are in their journey. I’m just trying to be my whole, powerful self and make room for others to do the same.

It’s been a pretty harrowing June, and the last 24 hours have encapsulated the atmospheric highs and stomach-churning drops of being fully engaged in our democratic process. The Supreme Court decision to gut a key provision of the Voting Rights Act, the inspiring filibuster of a draconian anti-abortion bill in Texas, and today’s SCOTUS ruling on marriage equality have been a rollercoaster through elation, despair, outrage, cynicism, hope, admiration, and faith in the people, if not the process.

Through it all, I’ve fielded a number of questions about how I can stand to invest so much of my heart and effort into issues so much bigger than myself, many of which don’t even touch me in my place of acknowledged privilege. Personally, I’ve never felt like I had much of a choice–I couldn’t not care or act on that feeling. But here’s a brief primer in how to find that commitment in yourself.

Step #1: Figure out what you believe in. Everyone has core values, and those are the only things that can motivate someone to stand up and fight the good fight. If all you can come up with are things like “I believe Han Solo shot first,” or “I believe in cake,” or “I believe that Washington is evil,” you’re not digging deeply enough–you’ve got to strike bedrock for this to work.

If you believe in the magical, transformative power of books, put in some time to improve library access or literacy programs. If your faith is important to you, figure out ways to act on the belief that all God’s children are worthy of love, or that this planet was given to us as a sacred trust and should be preserved. If your religion is democracy, work to bring sunlight and integrity back to the broken processes that limit our rights.

My bedrock truth is that every single person has inherent worth and dignity, and I act on this in a multitude of ways. I work for racial and LGBT justice. I strive for more accepting and safe schools for our kids. I speak out for freedom of the press and against the death penalty and mass incarceration. I march for each woman’s right to choose. I stand up for rights and respect for disability rights and neurodiversity. So many issues, one underlying principle.

Step #2: Show up. I’m not being trite or overly simplistic. Inertia is the greatest enemy to getting active on the issues that move you, and it’s why you need that deeply motivating value to clear away obstacles. Don’t know how to get involved? There’s this fantastic thing called the Google Machine. Use it. Scheduling conflicts? I don’t know an organization anywhere that won’t take whatever time you can spare, whenever you can spare it. Afraid of being challenged? Good. New experiences do that. But when you act in spite of that fear, you are most open to the experiences that will expand your views, your world, your circle of friends, and your hope for the future.

Two important things about showing up, though.  First, show up as an apprentice. Too many groups swoop in as “suburban saviors,” with big ideas about how to fix people’s problems in a weekend. These solutions are the likeliest to stick, and they come from a place of privilege and self-gratification, not true altruism. Don’t come with an agenda–show up and ask how you can help.  Second, keep showing up. Again and again, on the issues that matter to the community you’re joining. Let them know that you’re an ally who can be counted upon.

Step #3: Profit. Okay, I’m mostly kidding about this, but stick with me. You’ll never make big money doing good works, but that’s not why anyone gets into it. The dividends are much more varied and durable than money, though. When you keep showing up, you learn new skills, many of which spill over into the rest of your life and make you a better worker, partner, parent, and friend. The base of people you know explodes. If networking is king in the new economy, activism is like LinkedIn that actually helps people. Also, you’re going to have a ridiculous amount of fun. If you’re not having fun at least part of the time, then it’s not activism that’s failing you–it’s that you haven’t found the right group of people to do this work with, so keep looking!

Another important note: Profit happens, yes, but investing yourself in issues and people comes with ups and downs. The only way to keep the fire lit under your chair is self-care. Set boundaries about how much time and energy you can afford to give, so you don’t flame out in a few months–AND THEN KEEP THEM. Organizers are going to test those boundaries, and defending them is excellent practice for doing so in other parts of your life. And when you do feel like you’re burning out, don’t turn inward and shut down. Reach out to other activists who’ve been doing it longer than you. Ask how they stay fresh. Trust me, it works.

So that’s it. It’s not superhuman, it’s not rocket science. Pick something that matters to you, show up ready to work, and keep coming back. Every single person is an activist waiting for an issue, and we never know when we’ll break through and make history.

I’m sleeping pretty well, but I wake up exhausted every morning. This is Day 8 of a skull-crushing tension headache. Fears I’m forgetting something important plague me constantly. Activities that used to leave me with a two-hour adrenaline hangover now make me tired before I even start. My threshold for sensory overload is so low, I’m having small meltdowns several times a day. I stop taking phone calls. I avoid friends.

I am burned out.

I’m excellent at being the little cog in a big machine, but I need a solid sense of the macro to stay motivated. But lately, everything’s been so myopic that I can’t see my place in the larger efforts I’m working toward, and it hasn’t been good for me. I feel myself withdrawing, and I don’t like being powerless to stop it. It’s crunch time, and I’m more disengaged than ever.

I called a dear friend for a lunch date, to ask him how he’s dealt with the burnout that must have been familiar in his super-intense job over the last year. Just seeing him makes colors brighter, but I need his advice, so I asked him how he manages to stay fresh over the long haul.

Some of that advice is expected. You have to set boundaries and practice saying “no.” Be at home when you’re at home. Put away the cellphone and computer. Make yourself present for your loved ones, and don’t feel guilty when you do something you love that’s totally unrelated to the greater effort. Self-improvement can wait. Feed your soul. Rest.

Some of his advice triggers an instant inner eyeroll, but I try to take it to heart, since I’m at such a loss with my own efforts. At the end of the day, take the time to write down one thing you did well. Accept praise. Don’t let doubts or second guesses stick around. Self-talk feels artificial, but it registers somewhere deep inside our brains, so do it anyway.

I’m someone who has a negative, self-critical tape on endless replay at varying volumes in her mind all the time. These are difficult steps to imagine taking. I realize that part of what’s made me feel insignificant over the last several weeks is a lack of outside reinforcement for anything specific I do. I don’t know what I’m good at. It’s impossible for me to ask for praise, but I’m starving for it. Recognition by another human that your inner intentions and outer efforts are registering in the world is absolutely necessary. My friend holds my hands and tells me how much love he always senses pouring out of me toward every person I meet. I cry a little; I’m tearing up again now as I write this.

In the grand scheme of things, the fact that I’m feeling burned out at last after over 14 months of non-stop effort and tension is only surprising in that it took this long. We all go through cycles of intense focus, followed by necessary disengagement. Only the daily grind of steady work is unnatural in this process, and constant effort is unhealthy and untenable.

But if I want to relight the fire that burns inside me for the work that makes me valuable in the world, I have to do exactly what’s most difficult right now. I need to reach out to other people for that moment of human connection. I need to remember what I love about what I do, and let others see that. I need to ask for help seeing the Big Picture. I need to accept praise, even from myself. I need to make plans and dream dreams for what happens after this work is done. I need to keep creating, whether it’s adding just ten words on a writing project, or prepping my garden for planting, or baking cookies.  I need to let small joys accumulate.

Burnout is real and natural, but the solution isn’t smothering the fire. It turns out, the answer is letting others help you feed the flames.

Today is World Autism Awareness Day, but autistics and many concerned advocates have done a great job of rebranding it as Autism Acceptance Day/Month. What’s the difference, you may ask? To many neurodiverse people, “awareness” and “acceptance” are as far apart as “tolerance” and “equality.” We don’t want past and current generations of people who are differently wired than our neurotypical family and friends to just subsist on the fringes until a “cure” is found for those not yet diagnosed (or even born).

But many of those neurotypical allies don’t really know where to begin when faced with the complex spectrum of autism-related traits and patterns, and I know they’d be genuinely mortified if they grabbed the wrong end of the facts and proceeded as informed.

So here’s a very short, very subjective list of places you can go to experience some of the range and diversity of autism. If you’ve found something you feel should be on this list, please leave it in comments! I’m always on the lookout for new resources! And if you don’t know where something you’ve come across fits on the range of positive voices, please don’t feel embarrassed to ask–wanting to be informed is the first and most important step for any ally of any kind.

Filmography

The documentary Loving Lampposts, available on instant Netflix in at least the U.S., does an excellent job of approaching its autistic subjects with sensitivity and a willingness to truly hear their experiences. I especially appreciated that it included role models who are non-verbal, showing the brilliant thoughts that speech alone is incapable of capturing for them.

The only “fictional” movie I’ve seen that does a good job with autism is the HBO docudrama Temple Grandin (based on the real life of the autism pioneer), but two TV shows, Parenthood and Alphas, portray their autistic characters in ways that have made me gasp, laugh, and cry with recognition and gratitude. Many people cite the new BBC series Sherlock for the Asperger’s-like characteristics the title character shows, but given his other egomaniacal and insensitive traits, he’s not exactly what I’d call a role model, no matter how brilliant he is.

Bibliography

There’s a wide and diverse array of books out there about autism, but I’m only going to recommend the ones I’ve personally read. A few are fiction, but most are memoirs of one kind or another. It’s amazing to see your own life in print without having written a word. And in general, while autistics have found many ways to manage their symptoms and concurrent problems like food allergies or other medical issues, back away slowly from any book that talks about “preventing” or “curing” autism.

The Speed of Dark by Elizabeth Moon

The Curious Incident of the Dog in the Night-Time by Mark Haddon

Look Me In The Eye: My Life with Asperger’s by John Elder Robison (he’s written two more memoirs since, and I assume they’re just as good as his first)

The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband by David Finch (he too has written successive books that I intend to get to in my Pile o’Shame)

If you only read one book on this list, read Loud Hands: Autistic People, Speaking, an anthology edited by Julia Bascom.

If you only read one author at all, read anything you can get by Dr. Temple Grandin.

Organizography (yes, I’m starting to make up words)

A great alternative to Autism Speaks, which is to be avoided at all costs, is the Autistic Self-Advocacy Network (ASAN). Co-founder Ari Ne’eman works on behalf of the org to bring cases of abuse and discrimination to public attention, as well as to make autistic voices heard in the room for discussions of policy and programs all the way up to the federal level. Their motto is “Nothing About Us, Without Us,” and their website is a great resource for allies as well as autistic folks.

Both national and local branches of Autism Society are also generally positive, though some may be more or less dominated by parents and teachers of autistics, rather than autistics themselves. That’s something to gauge on your own; if you don’t hear from an autistic person within a few meetings or press releases, that may not be a great sign.

Blogography (that one may or may not be a real word by now)

The number of excellent autistic bloggers out there is too numerous for me to do justice to, but you may want to start with a group on Facebook or Twitter like ASAN, Autism Women’s Network, WrongPlanet.net, or The Thinking Person’s Guide to Autism. They boost signal on blog posts and articles from a lot of great authors, not least among them are: Julia Bascom, Steve Silberman, Emily Willingham, Ibby Anderson-Grace, Shannon Des Roches Rosa, Estee Klar, and Lydia Brown. I know I’m forgetting a ton of good ones, so start friending/following the ones you like, and they’ll lead you to more and better, I’m certain. That’s how I got started at least.

Autism Speaks, I want to say that I won’t be lighting anything up blue in April. I won’t be donating money in any of the cans shaken by earnest coeds in shopping districts. I won’t wear a single piece of puzzle jewelry. I won’t be taking part in your walks, and neither will my son.

It’s too bad, really, Autism Speaks. Because my son and I are autistic, and we make fabulous spokespeople. Like many of our autistic brothers and sisters, we’re hyperlexic, so when we’re asked to speak, we do so way above our grade level. Our autism also gives us a natural enthusiasm, especially when asked to talk about the way the world looks to us, and we can describe clearly and concisely how our perceptions may differ from a neurotypical person’s.

The pink hair is not, sadly, part of my autism, but it is pretty awesome and it shows very well on camera. Too bad you won’t get any pictures of me participating in your orchestrations.

What I want to say to you, though, is very straightforward: I don’t need you to speak for me. I don’t need you to speak for my son.

Moreover, I don’t want you to. I don’t like the messages you send. By only having neurotypical board members, organizers, and spokespeople, you say autistics can’t speak for themselves and defuse the fear and confusion about life with autism.

By choosing a puzzle piece as your symbol, you suggest that autistics are incomplete or a mystery to be solved by someone else, instead of a pattern that is already intact and beautiful as it is.

By devoting a paltry four percent of your annual revenue to “Family Services” (that is, grants to families of autistics who need support for therapy and adaptive technology), you fail to help autistics right here and now.

The 44 percent of your revenue that goes toward research is almost solely dedicated to finding “a cure” for autism, preferably a prenatal test that would alert parents that their beautiful child will be wired differently than they expected. Your idea of a cure would solidify the public’s impression that autism is a life-ending curse.

And don’t even get me started on the fact that your fundraising, advertising, and administrative salaries exceed the percentage of revenue that goes both research and family services.

Instead of urging companies to “light it up blue,” why not ask them to train their employees on the nature of autism, and how best to help autistics who may be overwhelmed by the noise, light, crowds, and textures businesses use to entice neurotypical customers? Why not offer educational programs in the schools that give children the opportunity to see and question an adult autistic who thrives in their work and community? Why not raise money for respite care and better access to early intervention therapies that we know make a huge difference in the future success of autistic children?

The real quest of Autism Acceptance Month must be the quest to understand the beauty, complexity, challenge, and opportunity that autism brings. So keep your change in your pocket, and lace up your walking shoes to take the autistic kids of your family, friends, or neighbors out for a walk in the beautiful April air.

And most of all, let an autistic speak about autism. This may require listening very, very closely, or even reading texts or a chat program, because nonverbal autistics have important things to tell you too. Let them tell you about the flavors and textures and feelings that, while wildly overwhelming sometimes, are also rich and delightful. Let them tell you about what color the world is. Let them perseverate about their favorite things. Let them tell you how much they love you, in whatever way works for them.

That’s how autism really speaks.