Rabbit, Run

("Black in White" by Luke Chueh)

Let us take a moment to consider the strange, sad story of how Marissa's Bunny lost its way.

If you want a pretty complete telling of the story, go check out a post on Love That Max. In particular, read the comments, because much of the story plays out there.

(Shannon Des Roches Rosa sums it up very nicely, too.)

The short version is this: Marissa's Bunny tells the story of little Marissa, born in 2007 with a pretty terrible condition called West syndrome, or "infantile spasms". The blog is written by her father, Mike Wuerthele, and over time has garnered quite a following. A lot of people care very deeply for Marissa.

Last year, Mike turned to that caring community for help. He said he needed to raise money for surgery for Marissa. Thanks to the generosity of people in the gaming and disability communities, Mike raised almost thirty thousand dollars. It strikes me that the folks who helped Mike were very similar to those who helped Schuyler get her speech device six years ago. I suspect that some of them WERE the same people.

Here's where things get murky. Mike announced that he was starting the Marissa's Bunny Foundation, and with matching funds from his employer (who wished to remain anonymous), parents of kids with special needs could apply to receive free iPads for their children. This application process included submitting a great deal of extremely personal information. Forty parents were selected, and they were overjoyed.

Well, of course they were. In addition to the great need being filled, things like this are rare for parents of kids with disabilities. Generosity and good news are like buried treasure to these families. Enthusiastic parents began making plans with their therapists and school teams to incorporate these iPads into their kids' treatment and curriculum. Then they waited; many were notified that their iPads had shipped.

You know where this is going, I know.

As of this writing, not a single family has received an iPad. Mike has given a number of different stories, about shipping errors and legal obstacles and even threats made against him and his family, causing him to stop any shipments at the advice of his lawyers. He offered to refund donations to anyone who asked, but then claimed that his access to PayPal had been restricted.  As more and more people compared notes, the extent to which Mike had been covering his tracks and telling outright lies became clear.

Finally, it all came down to this, an email sent yesterday to the "winners":

There are no longer any iPads. I've never had access to the matching funds I've been promised. Something along the way changed and I'm getting hung out to dry by my bosses.


As to my obliqueness about my bosses and the company I work for, If their identities ever got out, long ago they promised I'd lose my job, my insurance, and take us for everything we have making Marissa's surgery impossible to afford. If I keep my mouth shut and the fact that I got screwed never gets out in any way then I keep my job, and my insurance, and they've promised to pay for Marissa's surgery after we give everything we can.


My reputation is now screwed with the SN community but I have to be able to give Marissa the best chance for as close to normal as possible and will happily work under whatever conditions I need to. I'll dance with the Devil if it gets Marissa what she needs.


We're not going to fundraise any more. There won't be any more giveaways on Marissasbunny for special needs or otherwise. I'm still going to update with Marissa's surgical preps and that kind of thing, but that's all. Marissasbunny is going back to what it was before they got involved, back when many of you started reading. No more promotions, just Marissa and her brother's story.


There are the first words that are my own and not through a corporate lawyer since Thursday.


Regretfully,
-Mike

There will be aftershocks to this story, I'm sure, especially since a number of people have apparently contacted law enforcement. As of this writing, Mike has said that he will be personally giving an iPad to a single winner this afternoon, with photos and no doubt some balloons and bullshit-flavored cupcakes. But I think this story is mostly over.

So what happened here? Was it all a scam, and if it was, to what end? No one paid for an iPad or a raffle ticket, but apparently there were pleas for matching funds funds from Mike's apparently mustache-twirling, comic book villain bosses. That request raised about $4400, funds that have now simply disappeared, along with other money raised for various reasons during the promotion. And the Marissa's Bunny Foundation? Does not appear to exist at all.

Does Marissa herself exist? Did that original almost thirty grand actually help her receive needed surgery? I'm going to step on my swelling cynicism for a moment and say that yeah, I believe that Marissa probably does exist and that Mike's original plea for money was legit. If Mike is anything like Julie and I, he must have been astonished at the generosity of a bunch of strangers on the internet.

Perhaps that opened a door to a dark place for him, a sense that "If it was that easy, then maybe..." Or maybe he was so desperate to be someone's hero that he kept this going to feed on the accolades and the gratitude for the work he was doing. Work that we now can see he probably wasn't doing at all.

I guess there are some lessons to be learned here, beyond the old "trust but verify". After all, when Julie and I and a good friend did a fundraiser to help buy Schuyler her speech device, those of you who donated took it on faith that we were telling the truth. As much as I've welcomed the democratization of the AAC process that the iPad has potentially brought to our families, this might just be the flip side. When you look carefully at Mike's whole "Free iPads for special needs kids!!!" promotion, it fails the sniff test on multiple levels. A speech-language therapist might have picked up on that, because an SLP doesn't exist on scraps of hope like special needs parents do. Situations like this serve as a reminder that regardless of the product or the therapy, we need as much professional guidance as we can get.

For me, however, there's a larger lesson here, a reminder that there is an even greater equalizer at work. People talk about the disability community as if we all gather at the VFW hall on Fridays and approve the minutes from the last meeting while practicing our secret handshake. And those of us who live in this world are treated like saints. "God chose YOU for this very very very special job!"

But our reality is one of blind selection, one of the few truly equal experiences in the universe. A very fair unfairness, perhaps. Membership in this community is open to Kennedys and Palins alike. We celebrate writers like Rupert Isaacson, but we struggle to make sense of someone like Arthur Miller. Many of us talk about how we're not special, we are just doing what any parent would do for their child, but we know that many don't.

Most of all, we like to believe that our commonalities provide a kind of sanctuary, and that when we hear a story like Marissa's and we meet someone like her father, we believe we can trust them. Because to face the alternative, to admit that a father would see his broken, beautiful daughter as a device by which to cheat his fellow special needs parents? That's a bitter pill to swallow. And we've forced down a lot of bitter medicine already.

I have a confession to make now. Honestly, I hope that there is no Marissa, or at the very least that she's a distant niece of Mike's, or a neighbor's kid. I find myself hoping that this is a full-blown scam, an attempt by an outsider to swindle families of kids with disabilities.

Because as bad as that would be, I find it worlds more troubling to imagine such a cynical act being committed by one of our own.

Why we fight.

This is why it matters.

From Courthouse News Service:

DAYTON, Ohio (CN) - Dayton police "mistook" a mentally handicapped teenager's speech impediment for "disrespect," so they Tasered, pepper-sprayed and beat him and called for backup from "upward of 20 police officers" after the boy rode his bicycle home to ask his mother for help, the boy's mom says.

Pamela Ford says her "mentally challenged/handicapped" son Jesse Kersey, 17, was riding his bike near his Dayton home when Officer Willie Hooper stopped him and tried to talk to him.

The mom says that "Prior to the incident described below, defendant Hooper knew Jesse and was aware that Jesse was mentally challenged/handicapped and a minor child."

[...]

"Jesse was charged with assault on a peace officer, resisting arrest, and obstructing official business."

However, "Jesse was declared incompetent by the Montgomery County Juvenile Court and the charges against Jesse were dismissed."

Jesse and his mom seek damages from the city and the two lead officers, for false imprisonment, false arrest, malicious prosecution, assault, battery, excessive use of force, infliction of emotional distress and civil conspiracy.

(Edited to add: Here's another article that gives the police officers' side of the story as well.  Interesting to note that even if you were to take the cops' side as gospel, it still brings up some questions.  Why would the cops behave this way even after being told, more than once, that there was a disability/communication issue?  Is this an appropriate force level for a kid riding his bicycle the wrong way down a street?  At any point, did the officer even try to take what would probably be minimal efforts to defuse the situation?  Even knowing the police side of the story, I still think the mother could have been charged with several counts of "exactly what Rob would have done".)

That could be Schuyler. That could be any non-verbal but ambulatory kid with a developmental disorder. It could be your kid.

Officer Willie Hooper knew Jesse Kersey, he was already aware of the young man's disability. He knew, and yet he still did this. He knew, but he didn't understand, didn't extend basic human dignity to a young man who didn't understand and couldn't communicate to the officer's satisfaction. This doesn't sound like a mistake. It sounds like a value judgment, one that ultimately concluded that a kid like Jesse Kersey HAD no value.

Now, where would someone get the idea that people with developmental disabilities have diminished value as human beings?

All this week, on Twitter and Facebook and my blog, I've made a little noise wherever I can about Tracy Morgan's recent remarks about kids with developmental disorders, and I've had a few good discussions about the topic. But I've also been told that I need to lighten up, that the attention directed at Morgan is tiresome, that free speech includes immunity from personal responsibility or simple human decency. I've been told that jokes about people with disabilities are harmless.

When I talk about a societal narrative fed by the likes of Tracy Morgan and members of the Dayton Police Department and the entitled hipsters loudly demanding their freedom of speech when taken to task for calling someone a retard, a societal narrative that re-enforces the idea that the least powerful among us are fair game, THIS is why it's important.

And when parents and advocates stand up and protest this narrative, we're not doing so to get a ride on "the Tracy Morgan free publicity train", as comedian Rob Corddry suggested on Twitter this week. We're not opportunists, looking for some sort of self-promotion. We're not pleased that Tracy Morgan gave us a chance to make a larger point, and we're not happy to shock the world with the story of Jesse Kersey, or any of the others who have been denied their dignity because they have the audacity to be broken, to be less than perfect, to be different.

We would love to live in a universe where our fellow citizens of the world heard vile remarks or read of monstrous deeds and stood up to say that we as a society are better than this. We'd like public figures and groups besides parents and the same advocacy groups like the Arc or Special Olympics to say "Well now, I may not have a dog in this fight, but that right there? THAT'S fucked up." We would like for the denial of basic human dignity to be something that distresses most anyone, outside those of us in the disability community. We'd like to feel like we have more choices that either keeping our mouths shut or standing on a hill, shouting into the wind and hoping we don't get hit by lightning.

In my book, I wrote about the island I dream about, the one where we'd go to live, just our little family, where a protecting ocean would shield Schuyler from the likes of Tracy Morgan and Officer Hooper and a depressingly large segment of society that sees her as a punchline, or worse. I admitted that I knew it was wrong, but it was still a very happy fantasy.

After this week and the conversations I keep finding myself having and the walls I keep throwing myself against, I would take Schuyler to that island in the time it would take to pack her sock monkeys and get to the airport.

Just a word: Tracy Morgan Edition

Just a word, Redux, a photo by Citizen Rob on Flickr.

It's been almost two months since I gave my own perspective on the so-called "R-Word" (May 5, 2001 - "Just a Word"), and an interesting conversation has grown out of it. The discussion gave me the opportunity to clarify my position a bit, and to also navigate some of the grey areas in my own thinking.

The most important point for me was that I'm not looking for some kind of ban on the word, which is a silly idea anyway. I don't want to stop people from saying that someone or something is "retarded" if they really want to. If someone feels compelled to use a word like "retard", I think they should absolutely do so, because I want to know that about them and the kind of person they are. And as a person who once used that word fairly frequently, even in my writing (and as recently as four years ago), I felt a little like Nixon going to China. If I can change because of my own experiences with my daughter and the people who would use that word on her, then maybe other people who have greater sensitivity than me can do it, too.

And honestly, I also want to give them a chance to convince me. I want them to understand exactly how powerful a word like that can be, and if they DO get that and still think it's the word they need to use, then I'm all ears. I'm probably not going to agree with them, but I don't think I'm going to change anyone's mind if I try to silence them from saying what they want to say.

Mostly, I want them to NOT want to say it in the first place. I want the word "retard" to taste bad in their mouths.

I was asked to join a Facebook group the other day, one that takes a fairly hard and unforgiving line against any use of the word "retarded" in the entertainment world. Ultimately, I declined. I understand what they wanted to do, but when someone like Lady Gaga or even President Obama slips up and makes an insensitive remark, it's their reaction and the steps they take to make it right that I think provide a chance for real change. You learn a great deal about a person's heart by how they react when they screw up. The word "retarded" has become such a part of the popular culture, and prying it out of the vernacular is going to take some patient work.

Furthermore, I couldn't get behind the group's blanket boycott of television shows and films with characters who use the word. When a celebrity makes a stupid remark in public, I am all for holding them responsible. But what about when a writer uses a word like "retarded" in a line of dialogue to help create a realistic character, like when portraying a snotty teenager on "The Killing"? (The most offensive thing about that show was the season finale; don't even get me started.) Or if the word is used by despicable characters in order to make a larger point about society and the entertainment industry, as in "Tropic Thunder"? As a writer, I have to respect that nuance, and the right of other writers to use ugliness to draw larger pictures.

There's a saying that if the only tool you have is a hammer, then every problem starts to look like a nail. I don't easily take up that particular hammer.

So there are grey areas, and there are honest mistakes that can be remedied, and in those remedies, further awareness of the power of words can be increased in society. If we attack every single utterance of "retarded" and refuse to accept the apologies of those who offer them, we're going to be using our very limited resources to play a gigantic, losing game of Whack-A-Mole. In most cases, we need to educate, not punish.

Because sometimes, there are battles that are truly deserving of every ounce of outrage we can muster. There are people who use the word "retarded" deliberately, not with the slip of a tongue and not wielded satirically, but with cold, cruel calculation, for the purpose of mocking children with disabilities. For easy laughs.

Cue Tracy Morgan...

(From NYTimes.com:)

After another brief flirtation with a woman in the crowd, Mr. Morgan turned sincere. "I love you all so much," he said, "did I tell you that tonight? I've been in trouble lately, and this was big for me that you all came out."

Whatever he had been accused of, Mr. Morgan said, "I don't have that in me. I believe gay, straight, anybody, everybody's supposed to be happy in this world, man."

Resuming his routine, Mr. Morgan warned his audience, "Don't ever mess with women who have retarded kids." As groans and cries of "Uh-oh" were heard, he continued, "Them young retarded males is strong. They're strong like chimps."

Finally, he concluded with a bit about his alleged teenage romance with a girl he described as "a cripple" with a prosthetic arm, a mechanical larynx and a portable dialysis machine.

Read it again.

Tracy Morgan didn't make a mistake, any more than his recent and vile anti-gay remarks were an accident. It wasn't an "oops" moment. He couldn't have thought for a moment that no one was paying attention, not on the heels of his previous homophobic remarks. It wasn't off the cuff. Knowing the risk he was taking, Tracy Morgan deliberately made a horrible, stupid and premeditated joke about a specific group of people whom he concluded were mostly powerless to push back.

I'm going to cynically suggest that he may very well have concluded correctly.

One of the most surprising defenses of using the word "retarded" as an insult that I've heard, on many occasions, is the idea that it's okay because a great many of those in a position to be hurt probably don't even know they've been insulted, and can't really respond meaningfully. (If you truly believe that makes it better and not worse, I have two words for you, and they're not "Happy Birthday".) But that argument might actually speak to an ugly truth, at least indirectly. In the entertainment industry, I suspect that the degree of the offense is largely determined by the power of the group being offended. Power as defined by purchasing power, political power, the power to organize and fundraise, the power to withdraw financial support, the power to boycott. The power to be heard.

Who's going to speak up for "retarded kids"? Parents? Kennedys? Is NBC going to risk firing their 30 Rock cash cow over this? Will Tina Fey and Star Jones express any regret for their earlier defense of Morgan's "good heart"?

If you've read my thoughts on use of the word "retarded" and wondered where I draw the line without nuance or shades of grey, here you go. I know he's not alone in the comedy world, but he's got a bigger platform than most. Tracy Morgan just set my gold standard for "Don't say that."

I hope I'll need to update this post to report on real consequences as a result of Tracy Morgan's attack on children with disabilities, probably the most powerless among us. But I'd be lying if I said I thought that was going to happen.

THIS is the fight. THESE are the kinds of things that lurk out there, the attitudes towards a segment of our population that struggles for respect like no other. We simply must make significant cultural and societal changes and acknowledge that the struggles of those with disabilities are nothing less than human rights issues.

Sometimes it's hard to identify the battles that are worth fighting.

Sometimes? Not so hard.

-----

Update, 6/30:  Well, more of a non-update.  The Associated Press put it succinctly.

(AP) – Thus far, Morgan has offered no response.

Well, why would he?

The cheese stands alone.

I've described how Schuyler tries so hard and almost succeeds in being just like everyone else, but within that "almost" lies an unhappy and oft-repeated story. That's never more true than in her relationships with neurotypical kids.

I'm going to just say it. I feel like this is probably my fault, mostly. There was a time, back when she was much younger, that Schuyler lived in a very internal world. In the months before and a year or two after her diagnosis, we were at a loss as to why she was so very very different, so very Schuyler. It was unclear just how much of her remoteness and ethereal quality was due to her lack of communication, and how much was from something more. More serious, more difficult to identify, more developmental in nature.

When Schuyler was old enough for school, and especially after we began looking for news ways for her to communicate, we made a choice, and it probably wasn't even a conscious one, either. We didn't worry about, or even consider, whether she would ultimately be happier simply growing up to be who she was, without forcing her into the world. We believed, as we continue to believe, that Schuyler had the ability to learn and to adapt and to one day live independently in the neurotypical world. Whether or not that was actually the most desirable goal never occurred to us.

Now, though, I'm not so sure. Did we push Schuyler to work hard, and to wish hard, for something that was ultimately going to be out of her reach, even if it is just out of her reach? I don't know. I still feel like anything less than a total commitment to the fight for inclusion, both academic and social, would be cheating Schuyler, but I'm no longer certain. I once thought that Schuyler's transition from her beautiful but mostly opaque inner place to the imperfect and sometimes cruel world of the rest of us was a mostly positive thing. She was smart enough to do it, she was ambulatory, she was socially precocious. If she could get close, what could be better for her? If Schuyler could become mostly one of us, surely we could all make up the difference.

Now I'm terribly unsure. I think perhaps I set her up to fail.

What do you do with a kid like Schuyler? More to the point, how do neurotypical kids roughly her age process who she is? She falls into a very specific crack, and it's no doubt a confusing space for typical kids to understand. I think most of them understand how to approach a kid with more severe (or perhaps simply more apparent) disabilities; kids are learning compassion from their families and teachers (or at least we hope they are), and they put that to good use with their disabled classmates. Likewise, I think they know how to navigate relationships with kids whose impairments are more superficial in nature. They know how to reach past those obstacles and reach a kid like themselves, and build relationships with those modest accommodations in place.

Schuyler continues to present a middle place, a child who looks and plays just like them, but for whom those standard rules of human interaction don't apply. It's not entirely, or even mostly, about communication, either. Schuyler presents as much younger, and frankly much stranger, than she appears, and it doesn't help that she has grown into a very tall girl, one of the tallest in her class. Schuyler can be very hard to understand in her entirety.

Grown-ups get this, and if you asked Schuyler to list the people she loves most in the world, almost all of them would be adults. But for kids, even those who know Schuyler well, she's confusing. She's happy and she wants to be their friend, but she's inexplicable and unable to play by the rules that they've been learning. It's not just communication, although that's part of it. It's also that she doesn't fit; she's not age-appropriate in some ways but ahead of her years in others. It's not anyone's fault, certainly not the typical kids who push her away. She's simply broken in ways they don't know how to accommodate.

This is inclusion's dirty little secret. It's a story I have heard from more parents than I can even number.

We've been having conversations with Schuyler this afternoon, trying to help her understand. How do you explain to a kid like Schuyler that because she's different (which she very much knows that she is), sometimes other people don't know how to be her friend? How do you get her to see the difference between a kid who doesn't know how to play with her and a kid who is being mean?

I'm not sure if she understands. She moves on quickly, so it seems like she's blowing it off, but then she'll mention some slight at a later time, perhaps days or weeks after. That's when it becomes clear that she carries all the little hurts with her, as if stuffed in her pockets. She doesn't obsess about them, but she doesn't forget.

I wish I had some answers.

F-Day

R & S, a photo by Citizen Rob on Flickr.

This Father's Day weekend, I'm going to take it easy, maybe hang at the pool with Schuyler, get some barbecue with the fam on Sunday, that sort of thing. Not so much with the sitting at the computer, hopefully.

I did contribute to some Father's Day items elsewhere, however. I was one of the fathers quoted over at Love That Max: Why dads of kids with special needs rock, and you can read my thoughts on expectations for special needs dads over at Support for Special Needs: One Father’s Perspective on Father’s Day. So there you go, lots of fatherly pontification for the weekend.

Here's some interesting news as well. I'll be speaking at the Special Needs Mini-Conference at BlogHer '11 in San Diego in August. So stalkers and killers, go gas up your windowless vans and make room in your freezer for my head. I'll be easy to pick out of the crowd, I suspect.

Anyway, Happy Father's Day, everyone. No ties, please.

A story of distraction

There's a story making the rounds, from North Carolina:

MATTHEWS, N.C. -- The mother of 12-year-old Jackson Helms said her son was removed from Elevation Church for being a “distraction” during their Easter service on April 24.

He has cerebral palsy.

She was supposed to meet with the church leaders to discuss what happened, but the pastor canceled the meeting when he heard she had contacted Channel 9.

We spoke with Jackson’s mother, Kelly Helms, today, and she says each day is a little tougher for Jackson than it is for normal children.

“Easter Sunday he got all dressed up, got ready to go, no small feat with a kiddo like him,” she said. But, right after the opening prayer inside Elevation’s sanctuary that Sunday, Helms said Jackson voiced his own kind of “Amen.”

“We were very abruptly escorted out.” Kelly Helms said.

Helms said a volunteer at Elevation took her and Jackson to the lobby to wait out the remainder of the service.

Helms said it was not a good feeling but saw an opportunity to contact the pastor with an offer to start a ministry for special needs children. She says the idea was rejected.

When Eyewitness News went to Elevation Church, an employee told us they focus on worship and not ministries.

But Elevation Church officials emailed Eyewitness News Wednesday night after our story aired. In a statement, a spokeswoman said "Everything we do is about ministry. We focus specifically on our worship and children’s ministries – and we partner with many other ministries in Charlotte."

The church statement continued to say "...this young man and his family were not removed from our church. They were escorted to a nearby section of our church where they watched the service in its entirety.".

Earlier Wednesday, the church issued a statement that said, “It is our goal at Elevation to offer a distraction free environment for all our guests. We look forward to resolving any misunderstanding that has occurred.”

Even though the pastor canceled the meeting with Kelly Helms, he called the Mecklenburg County ARC, an advocacy group for the disabled, and asked for special needs training for his staff.

When Channel 9 told Helms, she said this was the answer to her prayers.

I suppose that as a reader, you have to decide what the story is here. Because it seems to me that there are a few things at work.

Is this a story about the loneliness and isolation of parenting a child with special needs? That's the first thing that jumped out at me. I thought of this family, looking for spiritual refuge and instead finding a kind of judgment and rejection. I wonder about this mother, if she wondered why God would reject her and her son. I think the feeling that God has abandoned your child and your family occurs to just about every special needs parent at some point.

Is this a story about yet another failure of Christian values put to the test? How would the members of this church answer their bumper stickers? "What would Jesus do?" Is Jackson Helms a child of God? Does he have the same value in the eyes of God as a child with full control of his body and the ability to express himself "appropriately"?

Is this a story about overzealous disability parents making unreasonable demands of the world around them? Should the rest of the congregation be forced to endure the distraction of a child with CP in their midst, making a noise that they are unaccustomed to? There are a lot of people in the comments to that story that say exactly that.

"It seems to me that the Helms need to be the ones to get some sensitivity training on the rights of others (non-handicapped). A disability does not trump the rights of the rest of us, sorry. [...] I haven't said anything negative about the disabled child. I also have compassion for him and hope, as his Dad noted, that Divine Intervention will cure his condition. The problem is with his Mom and her lack of understanding that his disability does not give her special privileges over the rest of us."

"Why do you think that you have a "right" to inflict your kid or your dog or your parrot or whatever on other folks?"

"A "special needs child" is really no more different that a newborn baby. Constant need 24/7 noisy when in needs etc etc."

"If it was a crying baby, old man farting, or some redneck lighting up a smoke you all wouldn't mind kicking them out. Just because a child has special needs and is a bit of a distraction does not give him or her the right to make others peoples time at church uncomfortable."

"He was treated no different than anyone else who makes noise during service."

But of course, he IS different. He has cerebral palsy. And that difference isn't cultural or religious, and it's not one that he asked for. Most of all, it doesn't change his value as a human being, or his need for spiritual enrichment. For me and for my family, church is not the place where that's going to happen; a story like this just re-enforces that conviction on our part.  But for Jackson and his family, the Elevation Church was the house of worship where they sought that experience. The church failed them, and it failed Jackson Helms because of his disability.

Jackson was removed from the service after making a noise. A single sound. But the sound he made was a "non-typical" noise, and that noise was deemed inappropriate for a house of God. If you consider the story carefully, you'll see how that's what it boils down to.

You can decide what this story is about, but I can tell you what it's NOT about. It's not about someone being disrespectful or distracting. It's about a mother making other people uncomfortable with the mere presence of her disabled son.

The fact that it happened at all is terribly sad. The fact that it happened in a church? You decide what that feels like to you. I find it unsurprising. But that's me.

Mermaid soul

S, a photo by Citizen Rob on Flickr.

We are at the pool, and Schuyler is swimming.

If today were a Saturday or a Sunday, the place would be crowded, mostly with brash teenagers loudly claiming their territory. But it's late, just before sundown so the heat is ever-so-slightly less oppressive, and it's a Monday. We almost have the pool to ourselves.

Schuyler swims. Julie and I don't, not today, although one or the other of us usually will. Julie has just gotten home from work, a job she likes but which is sometimes more stressful than it should be. When she's home, Julie has the weight of the world on her shoulders, sometimes money and sometimes her health or mine but mostly the constant consideration and work and concern for her broken little girl. She shouldn't require decompression after work, but fairness isn't a right and that's just that. Today was a good day; Julie doesn't swim but instead soaks up the last bit of sun. I sit beside the pool as well, reading a book. This happens much less often than I care to admit, to my shame.

Schuyler swims, mostly alone. Something has changed since last summer, seemingly at once. Schuyler has always seemed fearless, but the truth is that until this summer, she was never entirely comfortable in the water. In the past, she loved to swim, but always with a hand close to the edge. The moments when she went underwater were always followed by a few sputtering seconds of recovery, hands flapping and panic in her eyes. Last summer saw some improvement, but still. There were Issues.

This summer has been different, and without transition. The first moment she jumped into the pool, she was entirely comfortable, and fearless. Now she leaps from the high walls around the edge with abandon, in a position resembling nothing so much as a jumping spider, pouncing on its prey in tv slow motion. She spends as much time underwater as her lungs can handle. When she swims, she keeps her legs together and does what Julie calls a dolphin kick but which looks to me exactly like the mermaids she loves.

After years of trying, Schuyler has found her mermaid soul.

There is another person in the pool, a shy little boy maybe a year or two younger than Schuyler. His grandmother watches him and tries to convince him to talk to Schuyler. Schuyler is all for this plan as well and invades his space with enthusiasm, but the boy is hesitant. We've seen it before, often when Schuyler is paired with autistic children in school or at conferences. For kids who are timid or who have social anxieties, Schuyler is kryptonite. She is a shy kid's devil.

The grandmother asks questions, but of course the pool is a place of vulnerability for Schuyler, without her speech device to answer for her. Schuyler wants to give her name, but she can't, and really, it doesn't seem to matter to the boy. He doesn't want to be left alone, exactly; as Schuyler swims and plays, he approaches her slowly, fascinated but confused by her, which puts him in league with basically the whole world, myself included.

Julie and I could get up and walk around the pool to be near the grandmother. We could make ourselves available to answer her questions, the ones she has been shouting to Schuyler in the fleeting moments that her head is above water. But we don't. We don't even discuss it; it's not a team snub. When we discuss it later, we discover that we were on the same page. Maybe we came across as impolite. Perhaps we actually were rude. It certainly wouldn't be the first time I've intentionally chosen to be chilly to someone, and not even in response to some perceived slight. The grandmother didn't do anything wrong, and yet we both chose to let her sit in her own confusion rather then enlighten her as to Schuyler's... schuylerness.

It's not something I can complain about, because I've clearly made something of a career out of it in recent years, but we don't always feel like we need to explain Schuyler. I've been more aware of it recently as I've been reading Jean Vanier and Ian Brown. We've spent so much time and energy trying to integrate Schuyler, and it's always been something that she has wanted. To fit in, to make her way in the typical world, these have been Schuyler's dreams, more hers if possible than ours, even. The fact that we've been unable to do that in some significant ways feels like one of the areas in which I have failed her the most. There's a lot I've gotten wrong with Schuyler, but perhaps my attempts to help her "pass" are the greatest. I'm no longer confident that it was ever the right thing to do, although she has certainly worked hard to make it happen, the thing she's wanted more than anything else in the world. She's always been Pinocchio, but there's never been much of a Blue Fairy to help her.

But lately, I've thought a great deal about Schuyler's right to exist on her own terms, without the pressure of a world in which she almost fits, but never completely does. I'm not talking about giving up on integration, certainly not in school, but at times like this, sitting by the pool and watching her swim like a sea creature, totally in her element, I understand that Schuyler doesn't need to fit. She doesn't need to talk, and we don't need to explain why she does what she does and can't do what she can't do. She only needs to swim, and we only need to watch, quietly and with something very much like peace.

Schuyler finally figures out how to reach the boy. She climbs out of the pool and up onto the wall, and she leaps fearlessly into the water, splashing down in her angry crab position. She swims to the surface and then points to him, a gauntlet playfully laid down. He smiles, maybe for the first time since she noisily entered his world, and then he climbs out of the pool and takes his place on the wall. He cannonballs into the water, and when he breaks the surface, he hears Schuyler clapping for him.

And that's it. Whatever connection they've been looking for has been made. The wordless girl and the shy boy take turns leaping from the wall. When they take the air, their anxieties remain behind them. They don't know each other's names or what grades they are in or any of the other questions that the grandmother tried to ask. They're not here to talk. They're here to swim.

When we leave, they wave to each other. "See you tomorrow," she says, although I have no idea if he understands her. I suspect he might.

Transitions

Every family has its traditions. A few of ours are a little strange, I suppose. Some have nothing to do with Schuyler's disability. When a new monster movie comes out, for example, Schuyler and I always go to see it together. Always. This dates back to King Kong when she was five and has included such kid-friendly fare as War of the Worlds and Cloverfield. I haven't checked to see what Super 8 is rated yet, but I suspect it won't matter. We'll be there on Friday morning.

When traditions come from a broken place, though, they can still have their unique ceremony and their own kind of charm. We don't think of them as having anything to do with disability until later, if at all.

Today Schuyler came home from her final day of classes, backpack full of the detritus of the fifth grade. She took off her shoes and threw them in her closet, and I'll be surprised if they see the light of day again before September. We went through her stuff and read through the comments written in her yearbook by her friends and teachers. I was happy to see that they pages were mostly full.

And then, as we've done every year of her school life, we got out her speech device and changed a setting on a page of pre-programmed often-used phrases, now telling the world that she is in the sixth grade.

This year, we got to change the school, too.

"I am in the sixth grade."

Broken Phantoms

R & S, a photo by Citizen Rob on Flickr.

We talk a lot about the "disability community", and it makes sense to think of ourselves that way. There's strength in numbers, after all, and where disability rights are concerned, it's almost always true that the rising tide lifts all boats. But the experiences that we have with our kids and our loved ones are very different, as are our perspectives and our philosophies. Like snowflakes and unhappy families, we're all broken, and enduring, in our own ways.

If there is any one particularly great experiential divide in our vast community, it may be that between the visually identifiable and the invisible disabilities. It's the difference between a kid in a wheelchair and one who is ambulatory but fighting organ failure; between a child with autism and one with the subtle but identifiable physical markers of Down syndrome; between a blind person with a white cane or a service dog and a deaf person with no visible hearing aids or cochlear implants.

It's the difference between a world of unwanted pity, and one of unwanted judgment.

The public face of disability is different for the visibly and the invisibly impaired, but they both suck the life out of the parents and the children who deflect, and educate on the fly, and most of all endure. I wouldn't trade places with the parent of the child with CP or Down, but that's less about comparing monsters (always a fool's errand), and more about sticking with the devil you know. I've never heard a parent say "I would trade situations with that person in a moment", no matter how broad the disparity. In a very real way, our children's monsters become our own.

Those of us who live in the outside, typical world have a burning desire to understand everyone we see, to KNOW, as if entitled, whatever we think is important about the people around us. I'm as guilty of this as anyone. When we have that information, which we have determined is entirely our business, we can then come to conclusions about the people around us, again as if we need to. We do it to our fellow typical citizens, certainly. And we do it to the broken among us as well.

So when we see someone with an outwardly manifesting impairment, it's tempting to conclude that their lives must be less than ours. Less enriching, less meaningful, and of less value. And we extend pity, because in the absence of a narrative, we've inserted our own, one in which we surely must be better off that THAT poor son of a bitch. It's a pity that is unwanted, and probably unwarranted.

But what do we do when we see someone who shows no outward defect, no physical stamp, no twist of the body as if from the hand of a spiteful God, no sculpted story on their blank faces? What do we do when we are faced with the howling child with the seemingly permissive parents? How do we respond to the older child with a younger child's mannerisms or trappings? Or the little girl who spins and plays as she walks and who speaks, when she does speak, in an alien tongue?

---

A friend recently recently wrote about a website called Too Big for Stroller. The premise is simple. People take clandestine photos of children in public places who appear to be too old or too big to ride in the strollers. The assumption is that these kids are the spoiled brats of permissive parents. It didn't take much searching, particularly in the comments of NBC and Salon articles about Too Big for Stroller, to find the stories of the broken children.

Some had diseases that robbed them of energy, so the only way to even go in public was to have a stroller as a backup. Some were weakened by failing organs. Some had invisible conditions that left them fragile. One parent told the story of the child whose high-tech wheelchair had malfunctioned and whose insurance carrier wouldn't pay for a loaner. The only way for this child to go out was in a stroller. The alternative for these families is to stay inside, at home, hidden away, or to spend a great deal of money for a wheelchair, exchanging scorn for pity. You pay your money and you take your chances.

And yet, the number of people who felt entitled to make assumptions and judgments was deeply depressing. And not all, or even most, were silenced once the possibility of disability was put in front of them. Adele Melander-Dayton, author of the dismissive and frankly cruel Salon piece (which referred to the site as "hilarious"), tweeted that her piece was causing people to "flip the f out". When I responded with my usual diplomacy and class ("Yeah, some of those 'flipping the f out' probably get sick of their kids with disabilities being mocked by douchebag hipsters."), it brought out this response from an anonymous treat of a tweeter:

"Because ALL seemingly-too-big-for-strollers-kids are disabled, and we are all mocking them with hate speech, right?"

And that's really the crux of it right there. We're not even going to pretend that NONE of them might be disabled, or even most of them. But however many kids with invisible disabilities might be made fun of or hurt by that site, they are acceptable collateral damage, because some of them are probably lazy kids with weak parents, and they must be judged.

And again, I've been guilty of that same thing in the past. I don't know anyone who hasn't, although I sort of wish I did.

We look, and we search within our own world of experience for a template, a perspective that makes sense of people who might otherwise be perplexing to us. When we don't find it, we render judgment. In doing so, we find the troubled autistic boy to be out of control, and his harried mother to be an irresponsible parent. We declare the exhausted child with the failing organ to be "Too Big for the Stroller". We hear the child speaking strangely and judge the parent for allowing their eight year-old to engage in "baby talk". We see the holes in what we know, and we spackle them in with our own insecurities, disguised as judgment fairly rendered.

---

"Your daughter is a beautiful child. Does not look at all like she was born with anything at all wrong with her. You are blessed."

I received this comment in an email just yesterday, from a very nice person who is reading my book. And she's right, we are blessed.

Schuyler is a beautiful child, much more so than any casual conjecture about my own genetic materials might suggest. She's beautiful, and she's unfailingly kind, and she loves with every cell of her gigantic heart. It's undeniably a blessing.

A blessing, but also sometimes a complication.

Schuyler has had teachers who believe in her, teachers who have worked hard with her for year after year. Her special education team has been tenacious on her behalf; her therapists equally so. We're confident that this will continue with her new team next year. As with any child, atypical or otherwise, the first step towards reaching Schuyler is understanding her. Understanding how she thinks, how she processes information, what she already knows, and how she can be reached.

But what of those who see her but don't understand? What of those mainstream teachers who may see her as a puzzle they never asked for, a challenge they don't wish to step up to? Someone else's job?

Early this year, we met with Schuyler's mainstream teacher, the one who was to teach her science and history and social studies. We expressed our expectations and our hopes for Schuyler. Even then, her response was to lay out the lecture-based plan she uses to teach, and when we expressed our concern that Schuyler might need extra help since she is such a visual learner, she replied that she probably wouldn't have a lot of time to do that. So we knew we were facing some challenges, and the year bore that out.

But at Schuyler's IEP meeting last week, when it came time for this teacher to give her report on Schuyler's academic progress and the work they'd done during the preceding year, she said that she hadn't really had the opportunity to get to know Schuyler all that well, but she was always affectionate and funny, and she did a great job of cleaning up after herself at lunch and was an enthusiastic helper in the classroom.

That was it.

Not a single word concerning academics, about how Schuyler learned in her class, or what this teacher did to help make the material accessible or what accommodations were made. The teacher seemed entirely unaware that she was even expected to teach Schuyler anything. From my admittedly very biased perspective, it was as if the concept of inclusion meant that Schuyler had a right to be parked in her class and to watch the other students, the REAL students, learn. Inclusion appeared to mean being a face in the class photo. Equating equal treatment with fair treatment sounds absolutely right, but that's only true if every student in your classroom has the exact same needs, and of course they do not.

We were shocked, and we were deeply, frustratingly and furiously disappointed, but we weren't surprised. We had been worried all year about this teacher, and we had reached out to try to help her, but in the end, she looked at Schuyler and seemed to see a lovable class pet.

A week later, I remain baffled by how this went down.

I guess it's easy to look at Schuyler and miss the peril she's in. It's easy to look at her and miss the monster. She's a pretty, energetic little girl with a winning personality and not an ounce of guile. She remains innocent to the point of naiveté, which is charming in some ways but also leaves her vulnerable to the world in a way that her outward toughness conceals. Schuyler's positive traits are so strong that her disability really can be invisible, unless you take the time to see, to really see, and to understand. When you do so, and when you project into the future, when she'll be just as far behind and just as in need of help but no longer a cute little girl, you can see just how badly she is wronged by faint praise and academic neglect.

In the absence of that understanding, it's easy to create your own narrative for her, and for us, I suppose. I know that for my own part, I can come across as a one-note tune, and something of a scold. I don't like that about myself, at all. But the thing that Julie and I have become acutely aware of this year, particularly recently, is how much depends on us. Recognizing how nice and pretty and cute Schuyler can be isn't advocacy. It won't save her.

Looking at Schuyler, it's easy to miss her monster. But it's there, and in some ways that matter a very great deal, it's winning.

A brief IEP update

Having written about Schuyler's impending IEP meeting, I suppose I should give a brief follow-up. The short version is that it felt like a very positive meeting, particularly from Schuyler's special education team and her therapists. Her elementary school team did a great job of preparing a plan for her transition, and the team leader from her new school was outstanding. She was incredibly positive, and she listened to us, really listened. After the meeting she sat down with Julie and me for an extremely candid chat, and we walked away feeling like we'd been heard. For parents of a kid with a disability who are trying to navigate the public school system, that's no small thing at all.

That's all I really have to say about it for now, although there may be another post about one extremely troubling aspect of the meeting coming soon after Schuyler's last day of school, depending on whether or not Julie and I are still pissed by then. (Smart money says watch for it.) There are still a lot of anxiety-inducing aspects of the transition to middle school to keep us up at night, everything from mean girls to mainstreaming to marimbas, but coming out of this meeting, we felt some real excitement and optimism for the future. And again, that is no small thing.

Not Acceptable

I think the most effective way to get people to stop using the "r word" is not so much to try to ban its use or impose some kind of embargo on it. That approach just seems to bring out the worst kinds of entitled, obtuse, "Fight the Man" arguments about what the word technically means and how we should just make the choice not to be offended, etc. Trust me, I know.

I like this PSA because it makes what I believe is a more effective point, that you ought to care how much your words hurt someone else, but even if you don't, calling someone a retard simply makes you look like a bigot. Or rather, it alerts the world that you ARE in fact a bigot.

Thanks to the Spread the Word to End the Word campaign (sponsored by Special Olympics and Best Buddies), and particularly to Lauren Potter and Jane Lynch. I like this PSA very much.

(I'm still not going to watch Glee, though. Sorry.)

Who She Is

The Purple Ninja and Bughead
Originally uploaded by Citizen Rob

Tomorrow is Schuyler's ARD meeting. We'll meet with her school team and talk about her year, and plan the goals for next year with a whole new team at a whole new school. These meetings at this school are usually pretty straight-forward; unlike a lot of parents, we've never had to beg for services, after all. Until last year, they were mostly an exercise in formality. We were all on the same page.

It changed, subtly, last spring when the district diagnostician began her now-infamous quest to retest Schuyler's IQ in order to get a lower score, the score she believed would be more accurate, the one that would classify Schuyler as mentally retarded. She did so without dissent from anyone else on the team. Anyone but us, anyway. It was all done with the best of intentions, I know. But last year, we suddenly felt like we saw one little girl and they saw another. It was hard to objectively weigh their opinions, backed by professional detachment, and ours, loaded with overbelief but also a depth of experience unique to parents and family, a familiarity that can't be known to even the most dedicated professional teacher or anyone else who goes home at the end of the day and moves on at the end of the year.

Tomorrow we go back, and we're hopeful that we'll be back to a place where we're all mostly on the same page and we're approaching Schuyler for who she is, not trying to redefine her as something that fits more easily into a box or a checklist or preconceived idea. That's what we hope for. That's also the expectation we try to bring, with a kind of polite fierceness.

None of this changes who Schuyler is. And it only changes who she may become if we let it, if any of us who work for her do so with the intention of making her fit. She HAS to fit, and yet she CAN'T fit. If that sounds like an unresolvable paradox, you're right, you're absolutely right. If it sounds like a familiar unresolvable paradox, I'll bet you're the parent of a different child, a broken child, like ours. Flawed and neuro-atypical, and yet unique and all their own.



Schuyler is who she is. If you want to know her, you don't need a diagnostic tool or years of impressive yet often irrelevant teaching experience. You need only to watch, and listen, and learn.

You'll figure out quickly that she wants friends, she wants them more than anything, even if they are in fact the hardest thing in the world for her to have, more difficult to acquire even than that goddamn marimba.

You'll learn that she has some unshatterable loves. Root beer. Lady Gaga. Dogs. Squinkies. Chick-fil-A. Fake farts in the bathtub. Summer spent in the pool. Painting her fingernails. Sea monsters and mermaids. Maxie. Referring to the police as "The Fuzz", "The Po Po" or "Johnny Law". Rattle-the-windows thunderstorms. Hot-air balloons. Mismatched socks.

You'll learn that she moves like the Tasmanian Devil, never in a straight line, rarely gracefully, and with a casual disregard for the personal space or safety of the people around her. You'll see her boundless energy, and you might envy it even as you worry about the breakables on the shelves around her.

You'll discover how important family relationships are to her. You'll watch her figure them out, like a complex cast of characters, and you'll see how she obsesses when something doesn't fit, like the one dead grandparent she'll never know. You'll see how much she wants the sister than she'll never have, the one she CAN never have.

If you watch Schuyler write, you'll see that she is behind her peers, but you might also see how her mind works in ways not devoid of logic. Sometimes, very very occasionally, you'll see a kind of Martian poetry in her written words.

Schuyler loves disguise. She hangs onto all her old Halloween costumes and mixes their parts. She loves wigs and masks and capes and hats. It is tempting to think that she is trying to be someone else, trying to adopt another identity, but really, I think most little girls her age are exactly the same way.

Schuyler is never jaded. Ever.

Spend some time with Schuyler and you'll find that she loves games, even if she balks at the rules. She plays Uno but hates to lose. She loves Rock Paper Scissors, but if she falls behind, she's likely to pull out something like a fist with her thumb pointed up ("Bomb"), or wiggly, menacing fingers ("Tarantula"). She loves to play "Real or Pretend", especially when there are qualifiers. Mermaids and fairies and angels and dragons are pretend. Dinosaurs are real. Dinosaurs that walk around eating people in the street are pretend. Cats are real. Talking cats are pretend.

Monsters are pretend. Except when they're not. She's ready for those, too.

Just another manic Doomsday

"No man has learned anything rightly, until he knows that every day is Doomsday." -- Ralph Waldo Emerson

It's a popular trend at the moment to make fun of all the folks (a surprising number, honestly, although I don't believe I know any of them personally, perhaps not so surprisingly) who believe that tomorrow will bring the End of Days. And I'm not going to lie, I've been enjoying it just as much as the next smartass. Large scale kookery is a gift for snotty people like me.

But then, it's worth noting that I get a pretty regular stream of email and comments from Christians who seem to take it personally that we're not raising Schuyler to be a Christian. Some of you take it almost as a given that this represents a failure in parenting. I am challenged regularly on whether or not it's fair to Schuyler, denying her a Christian life or a church family. Oddly, I never get emails from Jewish or Islamic readers asking why I am denying her the experience of their faith. But there are more than a few Christians who behave as if they are entitled to take a stab at bringing my child into the flock.

It even happened at Schuyler's school recently. I caught some grief from Christian readers a couple of years ago when I expressed displeasure because a teacher gave Schuyler an angel sticker, leaving us to explain what that meant. Those same folks will be equally irritated to hear that we were deeply annoyed a few weeks ago when one of Schuyler's public school teachers told her that when people die, they turn into angels and go to Heaven.

"What's the harm in that?" I can already hear it. We're overreacting, they'll say, just like they did before. They can't see that it's problematic for us because suddenly we are put in the position of having to address issues of religion and faith with Schuyler, not because we think she's ready (because she's absolutely not), but because someone else decided she is. It doesn't matter that we are her parents. A higher power is calling, after all. And to a Christian who believes all this, it doesn't seem unreasonable at all, I suppose.

If you've grown up with it, the basic points of the Christ story seem perfectly plausible. I keep reading how mainstream Christians are upset about this rapture thing because it makes their religion look ridiculous or even cult-like. The Bible says we can't know the day or the hour that the Apocalypse will arrive, after all. Christians don't want their perfectly reasonable faith being tarnished by silliness.

But here's the thing. To those of us who aren't believers and who aren't raising our kids as Christians, it's no more or less silly than the rest of it. It's hard for us to distinguish how a virgin birth or a resurrection story are perfectly believable, but the end of the world? That's just crazy talk.

The difference with the rapture, particularly when you attach a date to it, is that unlike the rest of the stories, this part is empirically disprovable. If you're reading this on Sunday, you already know that it was bogus. (If you're actually waiting until Sunday to declare its goofiness, I salute your objectivity.) It's uncomfortable for some Christians because it's easily dispatched with.

We are an agnostic family. That's how we're raising Schuyler, which (in addition to not being a threat to Christianity) is our choice and our privilege, just like any other family. That we are doing so in a very Christian community is a challenge that we've knowingly taken on, but non-Christian families do the same thing all over the country, and they all face this kind of thing on some level or another. It's not a tragedy. It's not a burden that we bear. It's a pain in the ass, at the very worst.

But if the idea of the holiest of you flying up into the air tomorrow strikes us as amusing, that's just the price you're going to have to pay. You've made your choice, which to us looks no more or less valid than choosing to worship Odin or Zeus or a character on a box of breakfast cereal. To you, my choice seems sad. To me, yours looks silly. I don't see that changing any time soon. Maybe on Saturday, but I'm not holding my heathen breath.

Seeing God, perhaps

Arrr.
Originally uploaded by Citizen Rob

"[We] see the face of God within the disabled. Their presence is a sign of God, who has chosen [quoting St. Paul] 'the foolish in order to confound the strong, the proud and the so-called wise of our world.' And so those we see as weak or marginalized are, in fact, the most worthy and powerful among us: they bring us closer to God." -- Jean Vanier, "Our Life Together"

I didn't know what to think the first time I read these words by Jean Vanier. They were quoted in Ian Brown's The Boy in the Moon, an extraordinary memoir written by the father of a profoundly disabled son. Brown's story is different from mine; his son Walker's disability is as extreme as Schuyler's is subtle. And yet in reading his words, I am struck by the similarities in our feelings about our beautiful broken children, extending even to some of the language we use as descriptors.

(Ironically, we differ slightly on the now-tiresome "r word", which he uses in some circumstances not related to people. But while I choose not to use the word as he does, I also recognize the unique position of the special needs parent to repurpose words like that, and the guilty pleasure that comes from the reactions of typical parents when faced with this forbidden word from the mouth of such a parent. I totally get that.)

When I read the quote by Vanier, it felt a little like some of the well-meaning but pretty uniformly awful things we've been told for years, about how kids like Schuyler are here to teach the rest of us something, or that she came into our lives because we were super special wonderful parents, or that God never gives us more than we can handle. (That last one is particularly heinous; ask any parent of a different child, and they'll be able to name people of their own acquaintance who have been given much more than they can bear, whether by a cruel God or wicked chance.)

But when you look deeper, it makes a kind of sense. A writer friend of mine was raised as a Quaker, and to her it was completely familiar. To the Quakers, God is a light that exists in every human, an intrinsic quality rather than an external force (ie. grumpy man in the sky, bossing everyone around and breaking stuff when he gets mad). We find God by seeking that light in others. Finding it within those whose lives seem the most remote from our own, and relating to those people instead of marginalizing them or running, that's a real path to seeing God.

I like that. I'm not sure I subscribe to it from a spiritual perspective, although it feels valid to me. My own spirituality runs outside of religion, as you probably already know. Recently, I received another critical remark about my beliefs. "The atheist pulling out the phrase 'Child of God' only when it suits you is so very distasteful." Of course, I have never claimed to be an atheist, not once, but there's a certain amount of dismissiveness that comes in response to calling oneself an agnostic. This commenter doesn't think I'm an atheist. But she does know that I'm not a Christian, and in her eyes, that's not all that different from believing nothing at all. Not being a Christian is offensive to a great many people, as is the idea that Schuyler isn't here to teach us all how to be better people.

For his part, Ian Brown doesn't believe that his son Walker represents the face of God. He sees instead the face of what it means to be a human being, both in his son's beauty and his brokenness. He sees the depth and complexity of his own love for his son, who has taught him (and I can't tell you how much Julie and I love this phrase, or how many times in the last week we've quoted it to each other and have wanted to quote it to people who are in our world and yet very much not) "the difference between a real problem and a mere complaint". For him, his son is a mirror.

I like that, too. In the faces of kids with disabilities, whether extreme like Walker Brown or mostly invisible and insidious like Schuyler, we are presented with the opportunity to truly explore what it means to be human. Brown says that Jean Vanier believes the severely afflicted force us to face two difficult questions. "Do you consider me human? Do you love me?" He believes, as I adamantly do as well, that as we meet people with disability in their own world, our answers to those questions evolve and solidify. We start, shamefully, with fear, of their appearance and the way they behave, and, I'd suggest, of the proof of the frailty of being human and how it can strike any of us, particularly our children. We move on to pity and to the stage where we help them and show them respect, but still regard them on some level as inferior.

It is only when we enter into real relationships of authentic depth that we are transformed by the broken among us. It is then, Vanier believes, that "they bring us closer to God".

As an agnostic, I nevertheless believe, on some level, that this is true. God? Maybe. It certainly brings us closer to understanding the truth of humanity, the hard-to-grasp reality that all of us have worth, and that worth is intrinsic, not something determined by the rest of us, or by an outside divine force. Other cultures understand that better, I think. In shamanistic societies, children who would be diagnosed as autistic or developmentally delayed or ADHD and medicated within an inch of their lives in this country are identified and groomed from an early age to serve as shamans, holy and in touch with the universe on a unique plane that is denied the rest of us. Is that wrong? Is it ridiculous or primitive? Or does it recognize a fact mostly lost on Western society, that even the most profoundly broken among us have value, and it is up to us to see that, not them to prove it?

In an interview with NPR, Ian Brown said something that hit close to home for me. It felt like truth, a cautionary truth.

"I think a disability masochist is somebody who made the decision to make their disabled child the most important thing in their life and the only important thing in their life. And they commit to that position and then when reality suggests there are other decisions, they get angry about it. It's like anybody who concentrates on one point of view and only one point of view. If you contradict them, they get nasty. You see it in political life every day. You often hear from these people something that drives me mad. It's one of the reasons I didn't want to write a book like this, and one of the reasons it took me so long to write the book was because I didn't want to write a 'misery memoir.' These misery memoirs, in addition to being badly written, you get the same sentimentality all the time: these are very special children, given to very special parents, by a very special God. The God thing is not often there, but it's often tacked on. And I think to myself, if Walker is God's idea of a gift, then God needs to read Emily Post. Because a jar of jam or a bottle of wine would have been fine, thank you very much."

I fear very much that I have become what he calls a "disability masochist", although honestly, I wonder sometimes how one avoids that trap. But for me, in ways that are probably much more difficult for parents with as impaired of a child as Brown has, it's more complicated than just making my disabled child the center of my life. I have done that, but it's not always or even mostly about her disability. In part, it happens because of the all-encompassing, complicated, enriching but enslaving love I feel for Schuyler. I suspect it's also because in trying so hard to understand the things that she desperately wants to tell us, we pay much closer attention to Schuyler than most parents do to their typical children. Schuyler doesn't have throw-away statements or everyday sentiments. We listen with every ounce of attention that we have, we strain to understand, and in doing so, we are treated to peeks inside a place unlike that of any other person in the world. Perhaps literally so.

There are moments, fleeting and wonderful, where it is possible, not to forget exactly, but to put Schuyler's disability into the background. It's always there, but sometimes it's unimportant, and what we are left with is a very simple (but of course not simple at all) joy of her existence. We can stop trying to make her fit and just experience who she is.

It happens, although the world has a funny way of popping that bubble. Last night, as we ate dinner at a fast food place, Schuyler was unusually joyful and chattery. I love when she's like that; I rarely try to stifle her in those moments, even when I can see, as I did last night, that she is drawing attention. This time it was a little girl, a few years younger than Schuyler, sitting at the table next to us. As we got up to throw away our trash, I heard her ask her father if Schuyler was retarded.

And thus the world pushes back in.

Schuyler and her broken friends aren't a gift, from God or anyone else. They exist on their own terms, as human as you or me, but they do give us the chance to look into something bigger, God if you like, or perhaps simply our own humanity, with all the ugliness and beauty inherent in our selves. We have a choice, whether to listen or to step back in fear and ignorance. I can only say that one of those choices is, even to an agnostic like myself, indescribably miraculous.

Same as it ever was

Wired
Originally uploaded by Citizen Rob

So the results of Schuyler's EEG are in, and they are... exactly what I thought they might be. She had no seizures during the 72-hour EEG, as we suspected. The choking incident wasn't triggered by anything neurological, and no seizures were recorded during waking hours. We haven't observed anything suspicious since probably a week before the EEG, so we weren't surprised. It's not the neurologist's fault. Schuyler's monster is apparently on Spring Break.

Well, that's not entirely true. Once again, like a happy playground that becomes a scary place full of perverts and drug dealers at night, Schuyler's brain transforms into a different world while she sleeps. On the left side of her brain in particular, she experiences epileptic discharges of a non-seizure variety. They are frequent and big, but brief, lasting about a fifth of a second. They're not causing seizures, although they may lead there in the future. (I read somewhere that people don't have seizures during dream sleep. I don't know if that's true or not, but I kind of like to believe that it is.)

These little Bzzzt!s ARE, however, the likely cause of Schuyler's fitful, twitchy sleep patterns. It sounded like her sleep video must have been exhausting to watch. We knew she was a restless sleeper; she hasn't been able to share a bed with us for many years, as she tosses and fidgets and sprawls out. (Surprisingly, though, she's not a light sleeper. She can still sleep through anything, but that sleep is very active. Weird, I know.) Waking her in the morning is always fun because you never know what kind of "Law & Order" murder victim pose you'll find her in. Now we know why. It's the Brain Pops, as we've started calling them.

Anyway, the neurologist believes that what we've observed in the past sound very much like seizures, so we'll continue to watch for them and continue to wait and worry and all that. We know a little more about what's happening inside her brain, but not much, and life goes on very much like it did before, with an amazing and puzzling little girl who inspires awe and love and fear and insecurity and who reminds us, in the words of Ian Brown, that some things in the world of a broken child are real problems, and some things are mere complaints. Some of you have expressed how hard this all must be for Julie and I, and we appreciate that. But we live every day with Schuyler, and our lives are enriched immeasurably by her presence. So perhaps we feel sort of bad for the rest of you who are Schuylerless.

Incidentally, we got a bill today from the neuro, asking us to pay a part that wasn't covered by insurance or the deductible we paid, a whopping sixteen dollars. I think we can scrape that together. As a result, however, we saw how much WAS covered by insurance. Almost seven grand, folks. That a lot of coin just to see Nighttime Brain Pops. Why, that's enough to buy Schuyler her practice marimba for band next year, four times.

That's a lot of marimbas, friends.

Just a word.

The world is just bound and determined to make me take a stand on the "R Word", isn't it?

The short story of why this came up this week is this: An old friend from high school had a comment thread going on Facebook, about politics and Osama bin Laden and all that, and another person from high school took the opportunity to insult all of us Liberals with a term cleverly derived from the word "retard". When I called her on this, a few people voiced similar opinions of distaste for the word, at which point another old friend surprised me by suggesting that the use of the term was fine in a political context, particularly by someone who had served in the armed forces in the past. "SOMEBODY here wanted to make this whole thing about him and/or his family," she said about me, "and the rest of you joined in for the stoning by making this an issue about special needs kiddos."

Here's how I responded, in the moment:

I'm sorry, I like you, but you don't get to decide who is offended by a term like "retard". You don't get to decide if that awful word and the associations that accompany it are acceptable in a public discourse, about politics or anything else. You don't get to decide if the families who face that kind of crap EVERY FUCKING DAY need to get over ourselves. You don't get to decide that context makes it okay to use a word that gets thrown around in reference to kids who can't even defend themselves as an insult to anyone. You don't get to decide that my child and tens of thousands like her are acceptable as punchlines. If you don't understand why YOU don't get to make that decision, then I simply don't know what to say. It's not about politics or freedom of speech. It's about being a goddamn decent human being.

Now, the person who made the original comment wasn't someone I'd ever been friends with in high school. Frankly, she was an idiot* back then and she has apparently committed to that state of affairs for the long haul, bless her heart. But the other person was someone for whom I actually have a great deal of respect. It was a harsh reminder that even among the good at heart, there are blind spots where disability is concerned. Or at least the use of that one loaded, terrible and stupid word.

*(Edited to add: Yes, I know. "Idiot" is kind of the same thing, from like a hundred years ago. I would no doubt be considered quite the scandalous cur in 19th century parlors and sanitoriums.)

In the past, I haven't really wanted to make much of the whole "R Word" issue. I know it means a lot to others, and I totally understand, but I thought it would be possible to take a more nuanced position. I'm a special needs parent and advocate, yes, but I'm also a writer, and the idea of "banned" terminology doesn't sit easily with me. And honestly, it's a word that over the years, I have had to work to keep from coming out of my own mouth, and particularly in my past writing. I'll confess to that. I wasn't offended by Tropic Thunder; on the contrary, I felt like it was satirically taking issue with movie actors who cynically use disability roles to boost their careers. And I've always felt that when someone outside the disability community uses that word, much like when white people use the "N Word", the person ultimately damaged in the eyes of the world is the user more than anyone else. Try using the word "retard" in a job interview and see where it gets you. You'd might as well wear a swastika on your head.

I wrote about this once before when it came up in regards to my daughter. Back in the spring of 2009, the school diagnostician wanted to give Schuyler another IQ test, one that would, in her opinion, give her a new and more accurate number. That number would classify Schuyler as mentally retarded.

We chose not to allow that test, and I think I can say with absolute certainty that we never will. But the conversation put something on the table, something undeniable, and once placed on the table, it never really goes away.

"In a range consistent with mental retardation." Retardation. Retarded. The "R Word".

Retard.

I have a little exercise for those of you who aren't a part of the disability community. I want you to say that word. (I'm not going to call it the "R Word" any more. If you want to use this shitty word, let's own it.) I want you to say it out loud to yourself. "Retard." (If you're at work, you might want to wait until later.) See how it feels, just as an independent word without context.

Now I want you to scroll down and find a photo of Schuyler. Look at it and say it again. "Retard." Because whether or not we ever allow a therapist or a teacher to attach that label, it's one that is already being tossed her way, and has been since she was very young. So try it. Look at her and say "retard". How does the word taste in your mouth now?

Now I'd like you to google terms like "developmental disability" and "Down syndrome", and go look at some of those kids. Look into their eyes and say "retard".

In each of these scenarios, try to assign yourself a number. Imagine how many times you think any of these kids has heard the word "retard". Now line up all the people who ever said it to them and then put yourself at the back of that line. What do you want to say to the person ahead of you? What about the next person who gets in that line behind you? How long do you think that line would be for adults with developmental disabilities?

Now, just for kicks, pull out a photo of YOUR kid, or your nephew or your brother or sister. Doesn't even have to be a kid, just someone that you love fiercely and would defend with everything you are. Look into their eyes and say it. "Retard." Imagine it's not you saying it, but someone else, some other person. Maybe a stranger, maybe someone you know and even like and trust.

Now imagine that other person trying to tell you that you're being overly sensitive, you're being "PC", that they have a right to use that word however they want, that it's okay in a certain context such as politics. Imagine they're calling you or someone else a retard, but instead of hearing that as a random insult, you associate it with someone you love, and that association is, by design, intended to be devastating and intentionally using your loved one as a benchmark for extreme stupidity.

Now, repeat this exercise until you want to break something, until you want to burn down the whole world.

That's how it feels to us when you use the word "retard".

Do I sound like a one-issue guy? I know that I do. I hate that I've become that person, and I hope I won't be forever, but yeah, maybe I have. I was once a fairly active political creature. In college, I once stood outside the death house in Huntsville protesting an execution. I even worked on the Paul Simon campaign, and how many people even remember who that was? I also used to bring the funny, or at least I thought so. And I used to write a great deal about music, which is what I thought the focus of my life would always be.

But this is it. This is who I am now. Every day, I feel the rest of it being put away, being filtered out, and what is left is a father with a broken little girl. And I get that wrong, a lot, but when I get it right, I am momentarily the person I am supposed to be.

There are people in this world, and I'm actually thinking of the parties involved in this particular incident, who have single issues dominating their lives as well. Some of them have served their country in the armed forces; others have children who are doing the same, and for them politics is very personal. Their passions come from those single dominating issues, and I get that.

But that passion, or that service for that matter, it doesn't give you license to use kids like Schuyler as insults or punchlines. You have a right to call me stupid because of my beliefs, absolutely. But you don't have license to say that I am so stupid that I am on the level of a child with a developmental disability, MY child, OUR children, as if that is the worst thing I could ever fear to be. You don't get to portray yourself as a child of God while you throw the most defenseless of us under the bus to score some point in a ridiculous Facebook comment thread.

Not without me calling you on it. Not without me at least giving you the option of looking into your own heart and deciding if you like what you see.

Monster trap

There's a lot to say about Schuyler's ambulatory EEG, I suppose, but perhaps the most important, at least at this early stage before we get any actual data from the process, is simply this: The glue came out of her hair without any of the trauma and irritation that we experienced last time.

Maybe it was new glue, or the fact that the tech appeared to have used less of it, or it may very well have been due to the good advice of the removal tech this time. (Apparently the key is to apply a liberal slathering of conditioner to dry hair and leave it on for a while. Half an hour worked well. Last time, we were advised to just comb out the hardened glue. Seriously.) Whatever the reason, the glue mostly washed right out, and the residual bits were easily removed thanks to the tiny little hair rake we had left over from a recent head lice false alarm. There are some ugly little abrasions on her forehead from the sensors, but those should go away quickly. I tip my metaphorical glue-covered wire hat to the neurology team, and to the industry that has clearly done some work in this area in the past two years.

As for the results of the test, it's obviously too early to know anything. The procedure wasn't much different this time, but there were some key additions that changed the overall feel of it. We didn't have to take Schuyler to the neuro office, for one thing; they came to our place and wired her up here. The primary reason for that home visit was to install a pair of stationary cameras, one pointing at her bed and the other parked in front of the couch, ready to capture any seizures that might occur. It was a strange experience, having a camera pointed at us 24/7 like some sort of very very very boring reality tv show.

Schuyler was more aware of her appearance this time around. When we went to Target to find a head scarf or a hat (or, as it turned out, both), she cowered behind me sadly, trying to keep from being seen. Schuyler's disability has always been an invisible one; her sudden experience with visual difference made me realize all over again that in some ways, she is a very fortunate broken little girl.


On Friday evening, Schuyler had an awful choking experience, maybe the worst ever. It wasn't with any forbidden food, either. I was sitting beside her but didn't notice immediately, so I have no idea if it was preceded by a seizure. I do know that the camera captured me at my very least impressive, freaking out over the whole thing, but I assume it also captured me reaching into the back of Schuyler's throat and dislodging the piece of food that was choking her, so perhaps I won't make the asshole reel after all.

Aside from that, I am oddly saddened to report that Schuyler's brain was, to our knowledge, happy and healthy all weekend. We watched lots of flashy tv and stayed up crazy late, but the monster didn't seem to take the bait. I'm hoping that perhaps we just missed a seizure, which is, again, a strange thing for a parent to say.

That's the thing about this process. The one thing we want to hear -- "Your kid is not having seizures." -- is the one answer we can't get. We might possibly hear that she had one; we will most likely be told that she didn't have one during the 72-hour window of the EEG. And we'll go on wondering, and waiting to see if something with bigger claws and sharper fangs decides to show its face.


And through it all, Schuyler will continue to do what she does. She'll wear funky clothes and play Mariokarts and listen to Lady Gaga. She'll go to middle school next year and become a drummer girl (Jesus Howard Christ, remind me to tell you about the practice marimba we need to get for her), she'll make friends there, she'll make frenemies and she'll sink or she'll swim. She'll grow taller if possible, and prettier if possible, and she'll attract more looks, not just from rude adults wondering what's wrong with her but also from those boys who might simply see a girl.

Once unaware of the monster along for the ride in her head, and now just unconcerned, Schuyler will persevere, because that's who she is. I don't even know if it's ever occurred to her to give up.

The comfort of cold comfort

"Tonight, I can report to the American people and to the world, the United States has conducted an operation that killed Osama bin Laden, the leader of al Qaeda, and a terrorist who's responsible for the murder of thousands of innocent men, women, and children."

I watched the president say the words that I honestly never thought I'd hear. Not like that, anyway. I always figured we'd find bin Laden the same way we found Joseph Mengele. Sometime in the future, we'd get a tip that bin Laden died peacefully in his sleep some years before, and we'd find an old grave and analyze the bones, and that would be that. A footnote to history, and nothing more.

Instead, it went down exactly like most Americans hoped it would. And while I don't have much to add to the volumes of opinion making their way to the Internet today, I thought I should at least mark the moment, fraught as it might be with complicated emotions.

I sat in front of my television and watched the celebrations that began last night, the chanting of "USA! USA! USA!", as if we'd just won Olympic gold instead of killing another human being, albeit an undeniably evil one. In my head, I knew that this was wrong, it was barbaric and not much better than the crowds in faraway places who cheered and danced in dusty village streets to celebrate the carnage of September 11th.

But in my heart, I felt the same way as those who were celebrating. I felt that same visceral, tribal satisfaction. And now, even in the cool consideration of the next day, I find that, try as I might, I can't truly fault the cheering Americans for whom bin Laden's death serves as a proxy for all the things that should have come out of our long, sad national response to 9/11, all the simple plans that turned out to be incredibly and unpatriotically complicated, all the battles that should have been won but instead just led to more war, and all the sacrifices to the cause of "national security" that instead of making them safer, just made them less free.

Killing bin Laden doesn't change any of that. But it feels like it should, and for now, that'll have to do.

Wired