Monthly Archives: January 2017

A Brief, Fantastical Respite

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When I was in high school, I was really into science fiction and fantasy literature. I guess I still am, but I don’t usually get the time to immerse myself in a good novel these days.

Anyway, there was this one fantasy series I read in high school called The Chronicles of Thomas Covenant. The author, Stephen R. Donaldson, imagined the books to be a kind of dark inversion of Tolkien’s classic The Lord of the Rings.

Each book in the series opens with the (anti)hero Thomas Covenant experiencing some kind of crisis that mars him physically just before he is transported to a realm known as The Land. While in The Land, Covenant is quickly healed of his wounds and ends up reluctantly accepting a perilous quest. Lots of action, tension, magic and romance ensue—often quite gripping.

Then, as Covenant to the climax of his quest, something happens to him. He is caught in a battle, perhaps, or a curse is uttered against him. Whatever it is, it leaves him with wounds exactly like the ones he had just before he entered the Land. It’s at this critical juncture that he finds himself back in our world in the exact same condition he was at the start: haggard, numb, bloodied, and exhausted.

A Magical Christmas.

Well, that’s what I felt like the week after Christmas. We had had a rough few days leading up to the holiday, and I was feeling pretty beat up. Nothing seemed to be going right. A few of the kids’ anxieties had gone through the roof, issues at school mushroomed, and a few tight deadlines at work led to late nights at the computer.

But something strange happened on Christmas Day, and it lasted a few days afterward. There were no melt downs. No tantrums. No OCD or anxiety or disrupted sleep. It was absolutely delightful! My own anxiety diminished. I was sleeping better. We even took most of the kids to my brother-in-law’s for a Christmas gathering, and I had a blast because it was completely uneventful. I was sailing along, enjoying life in ways I had forgotten about in the previous weeks.

So far, so good. But then by December 30, things began sliding downhill again. First one kid went south. Then another. And another. Slowly over the next three days, we re-entered our “normal” zone with the melt downs, the perseveration, the communication glitches, the anxiety—the whole nine yards. Even work issues flared up again!

By lunchtime on New Years Day, I was back to my usual self: weary, furtively looking back and forth to see who was going to erupt next, steeling myself for the inevitable, even feeling that familiar lump in my throat after helping one of the kids through a tough time.

So Sunday had come, and I was ready to start back at work as if nothing magical had happened at all. Just like Thomas Covenant.

Go Easy.

Now, before you go feeling sorry for me—or telling me to suck it up, Buttercup—let me say this: I suspect that many parents of special-needs kids can relate to this cycle. On one level, every parent appreciates the fun times, the easy times, the magical times. But there’s a poignancy when it happens for special-needs parents because for those few short days, they know what the rest of the parenting world feels like on an average day. They get a glimpse of the “normal” that most parents experience most of the time, and it feels good. But then they return to their own special “normal,” and they have to put on their big-boy pants again.

I’m not going to sugarcoat it. It’s hard. It’s draining. It’s isolating. It takes so much more time and energy and stamina to stay on top of your kids’ needs and challenges. Sometimes you can want to curl up in a corner and not come out for a few days.

But we can’t.

Let me make one other thing clear: Katie and I know that it’s not the kids’ fault. We don’t resent them for who they are or for their needs. Much, in fact, of what can weigh on us is watching our kids go all this turmoil. We wonder what their future will look like. We worry if they will be able to live on their own after we’re gone. We ache for them to be rid of their painful challenges. And we feel helpless.

So when you see a special-needs parent looking unusually rested and refreshed, know that a lot is going on underneath the surface. Know that sooner or later they’re going to go through a Thomas Covenant-like transformation. So go easy on them. Maybe even offer to help them when the need arises.

It’s Not the Disability, Stupid

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Well, the disability community’s Interwebs were lighting up again yesterday. This time, it was about Meryl Streep’s acceptance speech for the Cecil B. DeMille Award at Sunday night’s Golden Globes. For those who haven’t heard, Streep embedded in her speech a bit of criticism of one of Donald Trump’s more embarrassing moments on the campaign trail:

This instinct to humiliate, when it’s modeled by someone in the public platform, by someone powerful, it filters down into everybody’s life, because it kind of gives permission for other people to do the same thing. Disrespect invites disrespect, violence incites violence. And when the powerful use their position to bully others we all lose.

She was referring, of course, to Trump’s criticism of Washington Post reporter Serge Kovaleski, especially his mimicking of Kovaleski’s disability.

In response, as he has asserted many times previously, Trump told The New York Times, “I was never mocking anyone. I was calling into question a reporter who had gotten nervous because he had changed his story.”

The Data? The Argument? Or the Person?

Many people will find Trump’s words hard to swallow, but I wonder if something else isn’t going on here. I’m tempted to believe him when he says he wasn’t mocking Kovaleski’s disability. It’s likely that, to his mind, that’s not what he was doing at all. To his mind, he was simply rebutting something Kovaleski said. Full stop.

That’s where the problem lies.

It seems that Trump makes little distinction between the words that offend him and the person speaking the words—every aspect of that person. So if Kovaleski has offended him by implying that Mr. Trump wasn’t telling the truth about seeing thousands of Muslims celebrating the Twin Towers’ destruction on 9/11, then Kovaleski himself, in his totality, is fair game. And when he looks at Kovaleski, he sees the disability as a defining characteristic, one that is available to him as he pursues his retribution.

This tactic is similar to the way Trump responded to Meryl Streep’s address—tweeting that she is “over-rated.” As if her acting talent (or supposed lack thereof) disqualifies her from offering a considered opinion on any other matter. She’s a washed-up actress, so she must be wrong. About everything.

You see, it’s not enough to engage the argument; you have to destroy the person making it.

“We Create Our Own Reality.”

I don’t think Donald Trump is a pioneer in this area, either. He may have put his own personal stamp on it, but it’s been around forever. Especially on the political stage, but in other aspects of life, many assume that the best way to win an argument is to paint the one making that argument in the most insulting of colors. So anyone who supported Hillary Clinton is an abortion-loving, traditional family-hating liberal. Anyone who supported Trump is a heartless, uneducated, white knuckle-dragger. Opponents of Obama are racists, and pro-life people hate women’s rights. Truth and facts be damned, it’s all about the character of the person. Destroy the person, and you destroy the argument. And push aside the facts.

This reminded me of a conversation that journalist (and, incidentally, autism dad) Ron Suskind had with George W. Bush advisor Karl Rove. Here’s Suskind describing their exchange:

[Rove] said that guys like me were “in what we call the reality-based community,” which he defined as people who “believe that solutions emerge from your judicious study of discernible reality.” I nodded and murmured something about enlightenment principles and empiricism. He cut me off. “That’s not the way the world really works anymore,” he continued. “We’re an empire now, and when we act, we create our own reality. And while you’re studying that reality—judiciously, as you will—we’ll act again, creating other new realities, which you can study too, and that’s how things will sort out. We’re history’s actors . . . and you, all of you, will be left to just study what we do.”

This, I think, gets to the heart of Donald Trump’s (and many other people’s) way of dealing with inconvenient facts. Take the focus off of that which can be documented, and put it on the more subjective and ephemeral. Create a new reality, and create it loudly enough, and you’ll outshout the data.

Truth, Power, and The Art of the Deal.

I’ll close with one more quote. This time from Peter Steinfels, one-time editor and now occasional contributor for the Catholic magazine Commonweal.

Mr. Trump does not appear to see public discourse as a process of establishing a state of affairs and drawing conclusions from them.  He sees it as a process of negotiating—a negotiation that is ultimately a power struggle. As The Art of the Deal advises, you open this struggle with an extreme position, or in public debate the most exaggerated, inaccurate, even preposterous pronouncement available and then, if necessary, you ratchet down.

Discourse is not, in effect, about truth. It is about power. In this respect, Mr. Trump has a quintessentially postmodern mind. The stricture against lying is about as relevant to this understanding of public discourse as the infield fly rule is to backgammon.

So no, it’s not the disability, stupid. It’s just that: calling people stupid, or lame, or losers, or has beens, or wannabes, so that you don’t have to reckon with facts.