A White Christian Wrestles With Race

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In my Catholic elementary school, there were three minorities, all Hispanic.

I lived in the country, and my neighbors were white. All of them.

My teachers emphasized repeatedly and strongly that skin color was irrelevant in the eyes of God. I remember singing “What Color is God’s Skin?” (this version) in music class. But as I’ve said before, it’s a different thing to believe something in the abstract than it is to put it into practice. I always believed in equality. But for a long time, I failed to admit that inequality is still a real thing.

This summer while I was in Cincinnati for the pastoral music convention, my roommate and I took a couple hours off to walk down to the riverfront and visit the National Underground Railroad museum. What I hadn’t realized before that trip was that when you’re on the riverbank in Cincinnati, you are standing in free country looking at slave country. It gave an entirely new significance to those beautiful old homes across the river.

I said in that last post that I have been wrestling with race my entire adolescence and especially in adulthood. What does that mean, exactly? It means wrestling with unacknowledged attitudes, the essential segregation of my life, the knowledge that I should be trying to bridge those barriers, the introvert’s dread of doing so, the assumptions I don’t even know I’ve made, the “here’s how the world works” factors I take for granted that I assume must be the same for everyone, and especially, the slowly-dawning, horrifying realization that that last is not true at all.

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This structure is the center of the museum. It’s a building where slaves were held between legs of their journey or before sale. We were watching videos and reading signs alongside an African American family, and both my friend and I felt the same need to apologize. We didn’t do it. But we felt the compulsion. I know many people don’t buy into the “reparations” idea, but it’s hard not to feel the weight of your own privileged skin color, hard not to wonder if you would have had the courage to stand up for justice, when you’re face to face with this building.

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In the past few years I have had the incredible privilege of getting to know a handful of families who immigrated from Africa. I love these people. They constantly amaze me with the strength of their faith and their community, their generosity and openness. They have enriched my life and opened my heart in so many ways.

And all the questions of race, profiling, neo-Nazis, violence, police brutality–everything in the news seems so much more frightening to me now that I have entered into relationship with people who are really impacted by these issues.

Because let’s face it: it’s not going to impact me or my kids. Not directly, anyway. And it would be all too easy to sit back and say, “It’s sad, but what am I supposed to do about it? I don’t support neo-Nazis, so none of this is really my problem.”

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This painting, representing lives lost on the crossing from Africa to America, still brings tears to my eyes.

But it is our problem. Because even those of us who don’t want to believe or admit it have spent our entire lives benefiting from being white in a white-controlled world. None of us like to be challenged to examine our assumptions and the biases we don’t even recognize in our attitudes, but that doesn’t mean they don’t exist.

And if there are still enough white supremacists in our midst to populate a rally that can turn violent, then we as whites have failed in our responsibility as Christian parents to form our children. We have settled into our mostly-segregated, comfortable worlds and not forged relationships across racial lines for ourselves and our children. We have turned a blind eye to Christ in the face of people whose skin color is different than our own—not for any malicious reason, but because it’s awkward and hard.

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Smart phone camera. What can I say? But I didn’t delete the photo, and I include it here because even for me, a white woman, walking into the room and facing this costume felt like a sucker punch. It’s not okay for us to pretend we have no role and no responsibility in improving the world. Too much evil has been done in the name of preserving “white supremacy.” If we don’t stand up against what is being done in our name, we’re enabling the problem.

But wrestling with things that are awkward and hard is the way of the Cross. It’s the only way we become better—as individuals, as a Church, as a world. Pretending racism doesn’t exist—in the world, yes, but even in ourselves—is simply unacceptable. This is part of our duty as Christian disciples. And frankly, given the state of our country, I think it ought to be considered among the most important duties we have right now.

The problem with “yes” and “no”

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Photo by quinn.anya, via Flickr

Early last week, we received a fat packet in the mail from Nielsen ratings, asking us to complete their in-depth survey of all things money-related. (And here I thought they were only about TV ratings.)

Late last week, I answered a call which turned out to be a political poll…which I completed.

Now, for quite a while, I’ve been frustrated with the importance the news media gives to polls. Especially during campaign seasons, the attitude is often “X percentage of Y demographic thinks Z; therefore Z is reality.” In the absence of substantive, nuanced, rational debate, we’re left to base our vision of reality upon what everyone else thinks.

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Baaa. Baaa. Baaa. (Image by ASPatrick, via Flickr.)

This is not a problem confined to one side of the political spectrum or even to politics in general; it’s a systemic distortion. If 60% of American men like bushy man beards and lamb chops, that says absolutely nothing except that 60% of American men have bad taste.

(That was a joke. Seriously. Chill.)

So, back to my political poll. It asked me to answer “do you approve” questions with “yes” or “no.”

The first few I could answer pretty quickly, but as the poll dug into more and more specific questions, I began to squirm about being forced to answer in absolutes. I had a vague familiarity with the issue in question, but I certainly didn’t know enough about it to be answering the question.

Yet “I am not well enough educated on this issue to have a responsible opinion” is not among the available answers. I had to default to my global opinion on the larger topic. This, then, kicked me into a “here’s what said issue is all about; NOW what do you think?” It seemed, in my extremely limited knowledge of the situation, to be a fairly neutral presentation. But “fairly neutral” or not, I, in my limited understanding, could think of half a dozen complicating factors that might sway my opinion one direction or the other—not one of which was addressed in the summary being read to me by a recording.

Standing there in my kitchen, all I could think was:

“I’m not that well informed, but I’m well enough informed to know there’s a whole lot more to all of this than the information I’ve been given. Which means I really don’t have any business offering an opinion on this.”

But again, what options do I have? Yes, no, or hang up and fail to be counted altogether.

And that’s when it really crystallized for me: not only are polls directing reality as much as they are reacting to it—they’re being based upon the opinions of a whole electorate of people who don’t know enough to HAVE an opinion in the first place.

Now if that doesn’t make you despair of finding any path forward through the sewage pit our democracy has descended into, I don’t know what will.

Because we are being asked to direct public opinion to a yes or no when we don’t have all the facts. And if we had all the facts, they would undoubtedly show that there are weighty arguments to be made on both sides of virtually every issue.

Which means the answer to that “yes or no” question is actually, “Neither.”

Mayonnaise versus Miracle Whip, and other things that just don’t matter all that much

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OK, so if you haven’t picked up on it by now, you can’t possibly have been paying attention, there’s this: I am really opinionated.

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Photo by The World Through My Lense, via Flickr

I come from a long line of passionate and vocal opinionated people.

My kids are well on their way to continuing the family tradition.

A few weeks ago at Jazzercise, our instructor asked us “Mayonnaise versus Miracle Whip?” Now, considering we were all working our butts off, the response was fairly moderate. But still, we were all making faces and giving the stink-eye to people who swing the other way, so to speak. Myself included. But then it occurred to me, why the heck do we get so bent out of shape about this stuff? This is called “personal preference,” and there is no right or wrong.

That was the moment this crystallized for me, but it wasn’t the beginning. I’ve been pulling my hair out over the same issue lately in my family.

“Frozen is STUPID! It’s the WORST MOVIE EVER!” proclaim all the boys.

“No, it isn’t,” I said. “You liked it just fine when you first saw it. You’ve just seen it too many times. And Julianna likes it, so there’s no reason for you to be that way.”

“Jar Jar Binks is dumb!” (Alex.)

“No, he’s not, he’s totally awesome!” (Nicholas.)

Insert shouting match in the back of the van.

“GUYS!” (Me, at the top of my lungs.) “YOU CAN NOT LIKE JAR JAR BINKS, AND YOU CAN LIKE JAR JAR BINKS, AND IT DOESN’T HURT EITHER ONE OF YOU!” (Although Alex is right on this one. See also: opinionated.)

“Batman is the best superhero!” (Michael.)

“No, he’s NOT, HULK is the best superhero!” (Nicholas.)

“GUYS!” (Me, insert previous rant, with altered names.)

Okay, I hope you’re all chuckling, because this is the part where I hit the rest of us, who should have outgrown this a couple decades ago.

For instance: why can teachers not look forward to the last day of school, and work-at-home moms dread it, simultaneously? Both experiences are valid expressions of our own realities, and it costs us nothing to affirm and validate the experience of the other.

Or: why do we insist that the ONLY proper way to put the toilet paper on is over/under? I mean, really? Petty, ever?

Or: why can one person not say, “Decorating for every season makes me happy,” and another say, “Decorating for ANY season makes my head want to explode!” Why is it so threatening to us that people are–gasp–different?

It’s hardly any wonder that we can’t discuss the big issues with open minds and reason. We seem, collectively, to have decided every minor, unimportant, morally-neutral personal preference is a hill worth dying upon.

Which is why I’m stopping here today and sharing this (clean version of the) cartoon that came to me via one of Christian’s co-workers last week. It talks about the science of changing our minds–specifically, why we get so threatened by new ideas. It has a lot of food for thought in it. Hope you’ll click on through.

http://theoatmeal.com/comics/believe_clean

(And I swear, if the FB or blog comboxes devolve to arguments over Miracle Whip versus Mayonnaise, I will…I will….I don’t know. Do something obnoxious.)

 

The Conundrum of Wanting To Be a Christian Nation

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Bald Knob Cross, Southern Illinois. Photo by Nikonian Novice, via Flickr

Right after 9/11, a man I know shared a vision he had. His vision was of the people of the Middle East hearing American planes coming, except instead of dropping bombs, they dropped food and water and medical supplies. (He wrote it much more poetically than that, but that was the gist of it.)

At the time, I rolled my eyes. It seemed, in my infinite wisdom, hopelessly idealistic to think that giving help to people who already clearly hated us–as evidenced by what we’d just experienced–would do anything except provoke derision.

And yet, I’ve thought about it again and again and again over the years, because all our efforts to obliterate terrorism from the face of the earth via air strikes, drones, and military intervention seem to make things worse, not better. Take out Saddam and look what rises from the ashes. Cripple al Qaeda and you get ISIS. The more we sit in our ivory tower, trying to bomb bad guys out of existence, the more plentiful and more determined the bad guys seem to become.

Even the left doesn’t talk about taking my friend’s idealistic track very often. And I’ve never heard the right address it head on and say, “This is why that idea won’t work.” I really wish they would, because it’s getting harder for me to understand why we keep doing what we’re doing, when it seems all we’re doing is creating more people who don’t like us. It doesn’t make sense to me.

Periodically we get a lot of noise from certain quarters about being a Christian nation. But we don’t really act like one. The left says we can’t, because not everyone is Christian in this nation. The right says being a Christian (or at least, Judeo-Christian) nation is what made us great in the first place.

I’ve come to believe that the left is correct on this issue, even though I wish it were otherwise—because personally, I think being a Christian/Judeo-Christian nation would make us very great. The problem is, if you want to be a Christian nation, you have to embrace the whole package. The “care for the widow and orphan and alien” along with the “protect the unborn” and the “pray” thing. The example of the early Christians, who “held all things in common,” as yesterday’s Lectionary said, makes us squirm. For the first time this weekend, listening to that reading, I realized they weren’t setting up a commune, they were creating a family. To be a Christian nation, we would need to treat everyone in the country like family, and all the guests within our borders with the same level of hospitality as we would treat guests coming into our homes. (You can spin that out as far as you would like; I think the analogy holds a rational middle ground on immigration.)

But mostly, I look around the world, at all the places smoldering, needing nothing but a spark to ignite them. I think of the multitude of places where people are treating each other with horrifying disregard for human dignity—including in our own political system and on Facebook and Twitter—and I just wish we’d all stop and take a breath and think for a minute about what it really means to be a Christian, and where we personally are falling short in that regard.

On My Mind…

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As I write this blog post on a Sunday afternoon, I’m sitting at adaptive gymnastics and chuckling, because somehow my daughter managed to get herself appointed Demonstrator, Boss Lady and Chooser-Of-The-Next-Activity. There are fifty people, between kids, siblings, and volunteer “coaches,” gathered in a huge circle following her every instruction. And she’s so ebullient, so eminently comfortable. How does she do that? She didn’t get that from either of us.

Image by MissCaraReads, via Pixabay

I start with that because I have so much on my mind today, and a lot of it is troubling. Some of it involves self-flagellation. But I like to focus on the good, partly because I don’t think anyone wants to read wailing and gnashing of teeth, and partly because the more I focus on what’s wrong, the more it becomes the only thing I see.

I’ve always been opinionatedpassionate, but I also really, really, really hate conflict. So I tend to sit and stew in my own pot of frustration and resentment. For years, sometimes.

Yet recently I’m discovering within myself a nearly irresistible pull to do something. To engage with others or to approach the relevant authorities when I find something troubling.

Not everything. I mean, I find the sheer amount of time people spend on smart devices at the expense of real human interaction tremendously troubling, but it’s clear I’m not going to affect that. (You can sit there reading this on your smart devices and shake your head with pity for my husband, who is caught between a job that requires him to be available 24-7 and his wife, who bares her teeth if he pulls the phone out at dinner or during conversations.) I find the dependence on pharmaceuticals for family planning extremely troubling and birth control in general bad for the earth and for women–especially when there’s a really good alternative–but at the same time I am coming to recognize that many of the things that have made life better for women simply wouldn’t have happened without it.

Generally, wrestling with irreconcilable realities is not something I do in public.

Plus, sometimes it’s not appropriate to get on a soapbox. If there’s a relevant authority responsible for what’s troubling me, complaining about it on a blog or Facebook is passive-aggressive at best; at worst, it’s a deliberate choice to be angry rather than try to improve a situation. (Can you tell I’m contemplating one of those right now?)

And in almost every situation, there’s a need to stop, to think, to go looking for actual facts to back up–or negate–my adverse reaction. The last four months have been particularly fraught in my circles; as I said on Facebook one morning last week, I’d gotten into three arguments–two on one side of the political spectrum and one on the other. “Clearly,” I said, “today I’m feeling like planting a flag on the Centrist hill and dying there.”

The thing is, people are going off half-cocked a lot these days. I mean, is TrumpCare actually going to cut 24 million people’s health care, or are a bunch of people just going to decide to forgo health care?

The fact that both these claims are being splattered across my Facebook feed, without anyone there or in any news report I’ve heard saying, “Hey, maybe we should do some critical analysis of this, because these two claims simply can’t both be true”?—that fact is probably the thing that troubles me most right now. I mean, why doesn’t somebody ask the left-leaning Congressman to directly address the right’s claim, and the right-leaning Congressman to address the left’s claim? I think those two answers would illuminate an awful lot. This business of firing message points past past our opponents’ shoulders is only making everyone rattle sabers.

Recent conversations have caused me to evaluate my own reactions. On the spectrum of online activism, I lean heavily toward “control thy trigger finger.” And yet, I develop opinions as quickly as anyone else. The fact that I don’t fling them around Facebook doesn’t mean I’m actually properly informed. And that’s not okay. I have to do better.

So I guess, after wandering for 700 words, I have finally identified my point. I want to beg everyone I know, regardless of your political, religious, or philosophical bias:

Think before reacting.

Research before sharing.

If what you’re reading has exclamation points in the headline, go find a less biased source.

If it has obscenities in the headline, the text, or the URL, go looking for a more credible, less emotional source. Because there’s no way it’s giving you a clear picture. It’s just not.

If you get angry reading something, take a deep breath and analyze why—what fact or words caused that reaction—and then go do some due diligence to see if there’s more to the story. (Usually, the answer is “yes.” It might not change your opinion, but it will often clarify that it’s not Armegeddon.)

Spreading propaganda—left- or right-leaning, either one (I’ve seen plenty of both recently)—is inherently disrespectful not only to the system we all depend upon in this country—it’s disrespectful of human dignity.

We can do better.

We should do better.

If I Had A Lasso Of Truth…

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Image by Tom Simpson, via Flickr

It occurred to me today that if I were Wonder Woman, I wouldn’t bother going around beating up bad guys. I would just round them up in my lasso of truth and put them in front of a Facebook live stream and make them tell the truth, the whole truth, and nothing but the truth.

And I wouldn’t stop with the obvious “bad guys,” either. I’d lasso every politician and every sensationalist website author and put them in opposing pairs until they were forced to address each other’s concerns…respectfully. Without message points, half-truths, and distortions. The whole truth and nothing but.

I’d be the best superhero ever.

Don’t you agree?

When My Life Is Good, But So Many Others’ Lives…Aren’t.

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Photo by KOREA.NET, via Flickr

Photo by KOREA.NET, via Flickr

I dreamed last night that I met Pope Francis. Well, not so much met as happened to be standing right there when he blew by, laughing and carrying, of all things, a part of a broken toilet that needed to be thrown away. I was supposed to be meeting up with a friend from grad school to attend a concert. And I was supposed to be meeting up with my family, too. But I couldn’t find either one, so I was standing at the back of a long, grand church and clerics were processing out, and suddenly there he was: the pope, wearing jeans and a blue t-shirt, covered with a black plastic hair cutting wrap and hurrying by with a big smile and a carefree laugh and an utter lack of concern about dignity.

And I woke up so happy.

Lately I haven’t felt like I could deal with the news, so I’ve been ignoring it. But I knew I couldn’t go on like that forever. All of us who thought, “At least it’ll be over after the election” were totally wrong. I’m beginning to realize we’re entering a time of ongoing struggle for identity in our country. Me and conflict don’t get on well. (Is that grammatically correct? Whatever. I’m supposed to be writing off the cuff this year.) Interpersonal conflict, internal conflict, philosophical and moral conflict—the situation in our country now involves every blessed one.

It’s hard to recognize how good my life is—despite my propensity for complaining—and how, in contrast, many people are suddenly facing situations I can’t even imagine. People who did everything right and are still being penalized for their ethnicity.

I’ve been growing more conscious in recent months of race and wrestling with how to get past the hurdles that separate us. I made a new friend last week who spent a long time talking with me about it, and who affirmed my ability to bridge those gaps, at least on a person to person level.

But since I came home from the composers’ forum last week, I have re-entered the news cycle and found my joy in the immense blessings of my life taking a beating. It feels insensitive to share my joy with my friends when so many people are suffering from upheaval and a fear I can’t begin to comprehend, because my life is so far removed from it.

How can I focus on how great my life is when Jewish community centers are getting systematic bomb threats? When so many people have to tiptoe through their days, knowing people are going to put the worst spin on everything they say or do because their skin is brown instead of white? (This is not made up, by the way, as much as the white community would like to brush it off. People I know and care about have told me about it personally. Just because we don’t have a common frame of reference to comprehend it doesn’t mean it’s not real.)

And then there’s this: at a basketball game on Saturday night, my five-year-old saw two men in uniforms and said, “Mommy, there are police officers.” “Would you like to go meet them?” I asked, and he said, “No. I’m afraid they’ll shoot me.” Of course, he’s also afraid of Truman the Tiger, so maybe I shouldn’t overreact to that comment. Still, what future are we preparing, if this is what our communal actions are teaching the next generation?

How does a Christian respond to the suffering of others? I share your sorrow, all of you out there stuck in situations dire and bleak and getting more so by the day. But I know I can’t possibly feel it as keenly as you do. Nor do I know what to do next. I have no faith at all in politics, and even at a personal level, how do we engage in productive dialogue when so many people only hurl fallacies, biases and out-of-context facts at each other across the great abyss?

Pope Francis’ presence in my dream—the joy, the humility, and above all the fact that he had clearly been fixing a toilet—a symbol of small and practical, un-flashy things—was a signal to me of hope. A reminder that my job isn’t to impact political systems but to be the hands and feet of Christ, person to person, and trust God to put me where I need to be.

No Easy Answers

Division and Unity

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It was the stark division of color that struck me.

As we watched the map turn from neutral to red or blue last night, the analysts’ monologues were all about urban and rural. I flashed back to an article I read earlier in the election season, which talked about rural voters’ support for Trump as a reaction to losing their way of life–not that they think they’re losing it, but that they are. (Well worth reading, but–language alert.)

Watching that sea of red develop in every state they zoomed in upon, with these pockets of blue concentrated around metro areas, was heartbreaking. It underscored the fact that we have lost the willingness, if not the ability, to empathize with the pain of the Other. For quite a while, I’ve been coming down pretty hard on people unwilling to consider or empathize with the problems faced by urban dwellers. In the past year, I’ve heard a lot of rural people refuse to give credence to the protests of those who experience racial injustice, for instance.

But looking at that map last night underscored that I’ve heard big fat crickets from urban people on the topics of concern to rural voters, too. Except guns, of course. Nobody’s allowed to ignore the NRA. But the truth is, we can’t even get a regular acknowledgment in our churches’ weekly prayers of the needs of the farmers who fill our tables. And that’s here in mid-Missouri, where the combines and grain elevators are only a ten-minute drive away. In the major urban centers, where thousands of people have never heard of a combine, let alone seen one, it’s surely worse.

It’s been a horrible election cycle, crowning a decade or two of increasingly horrible election cycles. We can say what we want about the nastiness of the rhetoric in the campaigns, but the rhetoric is at least as bad in our own conversations and social media comments. And when, at 3:30a.m., I knew there would be no more sleeping for me this night, I realized the only thing to do was to pray. Pray that the ascendance of this incredibly divisive new president will act as catalyst for a real change in our country. Not a change of policy at the national level–those will forever wax and wane–but a change of heart for each and every one of us. I pray that this will shock us all into realizing what we have done by refusing to be open to each other–by refusing to recognize the pain of the Other and make it our own.

Then, and only then, will we again be one nation under God, indivisible, with liberty and justice for all.

Related:

Mercy (or the lack of it) on the road to the White House

It’s Not Just What You Say–It’s How You Say It

Walking The Fine Line

#Boycottpolitics2016

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Image by twicepix, via Flickr

For weeks, I’ve been debating stepping into the online political fray. I have a lot of opinions, and I’ve been driving around town distilling them into a collection of pithy one-liners that, as a Catholic rather than a Democrat or a Republican, would be certain to offend virtually every single person I know.

Conventional wisdom for writers says “If your professional thing isn’t politics, then shut up about politics. You’ll only shoot yourself in the foot.”

But if we don’t talk about the most important subjects, how can the world ever become a better place?

I began planning my post, and simultaneously praying whether or not I should go forward with it.

On the first day the Spirit reminded me of the importance of quiet.

On the second day, a fiction writing friend told us she was going offline until after the election.

On the third day I read a post, titled “I’m Pro-Life, and I Don’t Care About The Supreme Court“, and made the mistake of continuing on into the comments, where I found multiple examples like this:

“You just want an excuse to continue the racist and genocidal America Holocaust to include partial birth and full birth infanticide and the sale of lucrative murdered baby parts. Give Mrs. Clinton her money back.”

This man signed off with, “God bless, (name),” as if he hadn’t just spewed a mouthful of anything BUT blessing. Worse, he didn’t even seem to recognize the inherent contradiction, or the fact that he was giving the entire prolife movement a bad name.

At the end of Day Three, I got involved in a Facebook conversation preceded by the instructions “be polite and reasonable, please,” in which a particular individual lit into me for what I was saying without even stopping to read it carefully enough to hear what I was, yanno…saying.

And I realized:

It’s time to bow out of this crap.

Since the primary season, I’ve been following, reading, listening, and interacting, and it has done nothing except impoverish my spirit. I am far more anxious; I am constantly grieving the state of humanity. This political season has made it very difficult to cling to my belief in the ability of humanity to approach the world with reason, honesty, good intentions, and empathy.

I still believe that at heart, human beings are good. But we are not showing ourselves to be so this year. Actually, any time politics comes up, the worst parts of ourselves come out to play. But it’s so much worse this year. And it helps nothing, all this vitriol, all this angry, half-thought-out, buy-into-and-regurgitate-whatever-half-truth-mostly-lie-suits-your-political-color. It only hurts our ability to be what we were called to be. It doesn’t just damage the human dignity of the people we’re ripping to shreds. It damages ours, too.

I will vote, of course, although there’s little satisfaction in it this year. But I’m done being a political consumer. Nor will I be adding my collection of pithy one-liners to the fray. It’s bad for me as a human being, and being a good human being is what I am supposed to be doing.

Care to join me? #Boycottpolitics2016

The Saga of Orthotics, and why it’s important to talk about it during an election year

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I hope you’ll bear with me today, because there’s a reason I’m about to tell this story.

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Random cute picture to break up the text, and to offer a glimpse, however blurry, of Julianna’s “old” orthotics, known as AFOs (ankle-foot orthotics)

One thing that sometimes accompanies an extra 21st chromosome is “pronation.” This means that due to low muscle tone, the feet turn out. Julianna has fabulous health and good cognitive functioning but her feet are regularly regarded as the worst the experts have ever seen. She’s been in orthotics—shoe inserts—pretty much since she learned to walk.

Up till now, her inserts have carried a price tag of $1400 per pair. For several years this caused no issues because we have great insurance (because my husband is a public employee). But a year ago, our insurance changed and the provider was no longer in network. So we switched providers and went on faith that we just needed to hold the course. Unfortunately, Julianna has spent the last year with blisters (and now callouses) on the inside of her foot, where her body was fighting the insert because it was no longer what she needed. Even more fun? The insurance denied the claim. After six months of Christian beating them up on the phone, the insurance and the provider got their signals straight, but the upshot was nobody paid for the braces—insurance forced the provider to eat the cost.

This year, we went in wiser. We switched back to the provider we had worked with successfully; we called in the doctor for a meticulously-worded prescription; we talked to the local (taxpayer-funded) organization that funds services for people with special needs; and we made sure they were both in contact with insurance. It turns out Julianna needs a far more restrictive brace—one that goes all the way to her knee. Here’s the cost estimate:

orthotics crop

This is the pre-auth form; for now, as you see, the insurance provider seems amenable, but after last year we’re not counting our chickens.

I began this process in mid-June, and yesterday after a 1-hour consult, about a dozen phone calls and two more appointments, finally we brought home Julianna’s new braces.

Which is where Part B comes in: Sensory Issues.

Another thing that frequently goes along with special needs in general is sensory issues. Some kids cannot wear clothes with tags. Some kids need particular fabrics. Some kids cannot deal with being touched; others freak out with loud noises. I have long said Julianna’s only sensory issue is oral defensiveness, but I’m realizing I was wrong: any touch that smacks of medical practice makes her lose her ever-loving mind.

Step one: Casting.

They covered her leg with a sock and then wrapped the leg with the foot held in position, using a fast-setting moist, Ace-type bandage. I intended to document the whole process, but this was the best I got:

AFO 1

…because within 10 seconds of taking this shot, both Christian and I were on duty, me holding her body as still as I could and Christian holding her leg in the proper position so the orthotist could do the casting.

AFO 2

The finished casts

The rubber tube goes over the sock to help space so they can cut the cast off after it’s set. Total time at the orthotist’s office: 1 hour 15 minutes.

We came back 10 days later to pick up the braces. But it’s not that simple. See, there’s also padding inside the brace, and that has to be done when you come to pick them up. The brace does the major corrections, the pads do the minor ones. And when we got there last week, the lead orthotist decided the braces weren’t tall enough. They needed to be remade. Total time: 1 hour 15 minutes, with nothing to show for it.

We came back for a third time yesterday, at the end of the first day of school, to find an emergency procedure had set them behind by several hours. So we arrived at 3:40 p.m. and left at 6. And there was much wailing and shrieking and flailing of locked-up muscles, along with the word “No.” Otherwise she lost all verbal capacity. And this is what we came home with:

AFO 3

Notice: knee-length socks, which caused extreme sensory anxiety, and hard plastic outer shell (ditto), soft plastic inner shell, and special shoes.

And we have to go back on Friday to make sure they’re not rubbing her skin wrong…and possibly again in two weeks for followup.

Let me emphasize a few points:

1. This is a process we will go through every single year for the foreseeable future.

2. We will never have a guarantee that these suckers are going to be covered by insurance.

3. We have to do this, because the alternative is that her legs grow crooked and destroy her knees.

4. This is only one example in the array of issues dealt with by families who have loved ones with special needs.

I tell this epic-long story, breaking all my rules about keeping posts short, because I want people to understand that many of the life philosophies we cling to, philosophies that make a great deal of sense IN THEORY, really only hold up under circumstances where everything—or at least most things—go “right.” Small government and self-reliance are praiseworthy goals, but they must be pursued in tandem with a view of the world that is “pastoral,” to borrow a word from Church circles.

In other words, rules and guidelines are good, but people are more important.

My family is really blessed to have amazing insurance as well as advanced degrees and jobs that allow us to spend the time and mental gymnastics to successfully navigate the shoals of coverage/not coverage.

An awful lot of people don’t have those benefits.

An ex-legislator once told me insurance is for extraordinary things, not ordinary things, and that for special needs, things like therapies are ordinary. (And, presumably, $4000 orthotics.)

If I have made any point today, I hope it is that special needs are, by definition, extraordinary. Some problems cannot be solved by the private sector; some problems are too big to be borne by individuals without help. It’s not enough to say, “These kids have a right to be born.” If we’re going to support the right to life of children, we also have to support their right to a healthy existence once they’re born. It’s wrong to tell parents they HAVE to have these kids, and then withhold the support needed to raise them. (In another context we’d call that an “unfunded mandate”.)

I post this because I hope it will provide a needed perspective in this election season. This is one of many quiet, nuanced issues that receives zero attention in an atmosphere charged with shrieking about things that, when it comes right down to it, really don’t have much impact on people’s lives. I hope, at a minimum, our story gives people a perspective they never considered before.