I've got a feeling, just a hunch...

...that's it's going to be a good day.

Her world

In 2001, on the evening of September 11th, I sat in the dark while Julie cried and we both listened to the radio and the rumble of military jet fighters patrolling the skies of the east coast. I got up and went to Schuyler's room, scooped up my sleeping baby girl and brought her to sleep in our bed with us. And the thing I remember thinking was simply, "This is not the world I want my daughter to grow up in."

In the spring of 2003, on my lunch break, I walked into a cafeteria at the Yale Medical School with my friend Dana and sat, numb, as we watched the "shock & awe" bombing of Baghdad on CNN, surrounded by frightened students watching in near silence. And again, I thought of Schuyler, who was only months away from her monstrous diagnosis. I thought of her and the paranoid, grey world in which she was growing up, unaware of how much less certain it was soon to become for her. And again, it was not the world I wanted for her.

Tonight, twenty minutes ago, I watched the clock tick down to the polls closing on the west coast, and as soon as it hit zero, I saw the words on the screen as the networks pronounced Barack Obama the President-Elect of the United States. I watched the tears and laughter of people in Grant Park, white and black, as they watched history, REAL history being made. It wasn't just history stepping on them, squashing them under its cold boot like history has been doing since 2001. It was the history THEY made, the history that WE have made.

Now I sit here. I'm waiting for Barack Obama to come out and address the nation as the 44th president of the United States of America, and for the first time in the span of Schuyler's short life, I can say it, without hesitation and with a heart filled with anticipation and a sense of relief and rescue and possibility.

THIS is the world I want for my daughter. This one.

It's time.

I voted last week, as evidenced by my little "My vote counted" sticker. I joked a lot about how, when I voted for Obama in the most conservative voting county in Texas, I half expected the tornado sirens to go off, but the truth is that even here, there are a lot of Obama voters, judging from the yard signs and bumper stickers I've been seeing.

I don't think these are secret Democrats who have been tempted out of hiding. I suspect a lot of them are Republicans and Independents (like me, actually; it's been at least two election cycles since I've self-identified as a Democrat) who have seen an opportunity to do something different, before it's too late. I suspect there are a lot of people like myself who are afraid that if things keep going on the track they're going, this might be the last election where we actually choose a president rather than a local warlord. Parsing this election in terms of the fall of civilization too hyperbolic for you? Well, yeah, me too, probably, but still. As The Daily Show put it a few weeks ago, I sometimes think that Bush isn't just trying to become the worst president ever, but possibly the last.

Here's the thing, though. I have friends who are not only McCain supporters, but hard-core, right-wing, blood-red conservative Republicans. No, it's true. In fact, considering what a dick I can be about politics and religion, it's surprising how many of those friends I actually have. And I don't think they're deluded or suffering from a head injury. I think they're wrong, of course. But then, I suspect a lot of people think I'm wrong about a great many things. They stick around anyway, though, possibly for the same reason that some people watch auto racing from the safe seats in the back. What matters is that they are there. They remain my friends, and they care about their country.

You've probably heard a lot about how this is the most important election in this country since the Civil War, and that if you don't vote, the ghost of George Washington is going to show up in your bedroom late Wednesday night and poke you in the eye. I suspect that it's true, or mostly true, anyway. Well, maybe not the ghost part, as cool as that would be. But it does feel like we're at a point in our history where the high school textbooks of the future will start a new chapter.

Regardless of the outcome, regardless of your politics, and no matter how freaky you are about your position or how apathetic you might have become about the whole thing, go vote tomorrow. Go exercise maybe the one governing process the founding fathers gave you to participate in as a citizen that isn't completely fucked up now. Be a part of history, one way or the other.

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Edited to add: I just removed Google Ads from my site, due to the fact that California readers were being treated to a "Yes on Prop 8" ad on my site without my approval or even my knowledge. Thanks, Google. That was a pretty vile thing to do there. We're done, you and I.

Yay to the longtime reader who pointed it out to me in email. Boo to that same reader for asking why I'm opposed to gay marriage and in favor of writing discrimination into the constitution. ("I was very, very surprised and disappointed to discover that.") I mean, come on.

I'm glad someone finally said it.

"I'm also troubled by, not what Senator McCain says, but what members of the party say. And it is permitted to be said such things as, 'Well, you know that Mr. Obama is a Muslim.' Well, the correct answer is, he is not a Muslim, he's a Christian. He's always been a Christian. But the really right answer is, what if he is? Is there something wrong with being a Muslim in this country? The answer's no, that's not America. Is there something wrong with some seven-year-old Muslim-American kid believing that he or she could be president? Yet, I have heard senior members of my own party drop the suggestion, 'He's a Muslim and he might be associated with terrorists.' This is not the way we should be doing it in America.

"I feel strongly about this particular point because of a picture I saw in a magazine. It was a photo essay about troops who are serving in Iraq and Afghanistan. And one picture at the tail end of this photo essay was of a mother in Arlington Cemetery, and she had her head on the headstone of her son's grave. And as the picture focused in, you could see the writing on the headstone. And it gave his awards--Purple Heart, Bronze Star--showed that he died in Iraq, gave his date of birth, date of death. He was 20 years old. And then, at the very top of the headstone, it didn't have a Christian cross, it didn't have the Star of David, it had crescent and a star of the Islamic faith. And his name was Kareem Rashad Sultan Khan, and he was an American. He was born in New Jersey. He was 14 years old at the time of 9/11, and he waited until he can go serve his country, and he gave his life."

Politics of the Broken

As you might have noticed, unless you were busy redecorating that new rock you've been living under, the political scene in this country has gotten pretty nasty. I have no idea how the next two months are going to possibly go by without at least one candidate using the term "motherfuckers" on Meet the Press at some point. (Perhaps I should set my DVR, just in case.)

I keep seeing dubious "facts" being throw out into the mix (and honestly, I see it mostly from the McCain campaign, although perhaps that's just because I expect it from the Republicans and am thus activated to catch it when it happens), and when the opposition does some legwork and disproves the accusation, the party who originally threw the mud just leaves it stuck to the wall as if just saying it somehow made it true. The voting public is left with such a mess to sort through that they usually walk away in disgust and end up voting for the person with the best hair.

I hate watching that happen. I hate it more that I was almost party to it.

This morning, I received an email on an assistive communications discussion list I belong to. (Yeah, every day's a party in my depressing inbox.) The email claimed that Alaska Governor Sarah Palin was responsible for a SIXTY-TWO PERCENT cut in special education services during her brief tenure in office. I went online and did some cursory reading, and became convinced pretty quickly that it was true.

Here's what I found. The 2007 annual budget for the Department of Education and Early Development Special Schools in Alaska, which is overseen by the governor, showed the program funded at $8,265,300. This would have been approved prior to Palin taking office. The 2008 annual budget showed a reduction to $3,156,000, and the 2009 annual budget for that department showed the same. There's your sixty-two percent cut.

I was pissed. A lot of people were.

So I posted something on Twitter, which automatically posted a status update on Facebook, and before long I'd gotten a tiny little tornado going. I didn't have much time to spend researching the claim, since we had to take Schuyler to an eye appointment, but I kept thinking about it while I was gone. And the thing I kept thinking was how it simply didn't make sense.

Now, please understand something. For years, I had a bumper sticker on my old car that said "I'm too liberal for the Democratic Party". I find the Republican Party to be wrong in almost every area of policy, and furthermore I find their commitment to slimeball politics to be un-American. When the metaphorical Visigoths breach the walls of our modern day American Rome, it'll be the Republicans and their relentless polarization of our society unlocking the gates for them.

And the more I learn about Sarah Palin, the more I believe that she represents the most extreme positions of her party, to the point of becoming a cartoon villain. Here are just a few of her resume items:

-- As mayor of Bugfuck, Alaska, she tried to ban books and control media access to her staff. She also employed a lobbying firm and secured $27 million in earmarks for this town of fewer than 7,000 people.

-- The Alaska National Guard, her command of which is being touted as part of her executive experience, is experiencing such extreme personnel shortages that its aviation units are among the most poorly staffed in the nation; the Alaska Guard's top officer warns that the lack of qualified airmen has reached a crisis level and puts missions at risk.

-- She's deeply in love with the idea of drilling the shit out of her state of Alaska, doesn't believe in global warming and denies the viability of alternative energy solutions, saying that they "are far from imminent and would require more than 10 years to develop".

-- As part of her support for increased oil drilling in her state, Governor Palin sued the Bush administration in an effort to have polar bears removed from the list of threatened species. Polar bears! Who hates polar bears? It's a good thing puppies don't impede oil exploration.

-- Palin believe that Creationism should be taught in public schools and has frequently expressed her belief that Jesus Howard Christ needs to play a larger role in government. (Well, not literally; Jesus is a notorious slacker where civic responsibility is concerned. He dodges jury duty every time.)

-- As part of her deep Christian beliefs, she is opposed to abortion in all cases, even those resulting from rape or incest. The only unwanted pregnancies she's willing to give any ground on are ones in which childbirth would result in the death of the mother. Sarah Palin is very proud of her daughter for choosing to keep her baby (as if she would have tolerated any dissent), but she doesn't believe that anyone else should actually have that same choice.

-- Palin is a former director of "Ted Stevens Excellence in Public Service", an advocacy group for Republican women in Alaska. Stevens has been indicted by a grand jury for violations of the Ethics in Government Act. He is also out of his tiny mind, incidentally.

-- Most amusingly for me, as a citizen of the former Republic of Texas (which has its own very similar nutbags), Sarah Palin and her husband have very direct ties to the Alaskan Independence Party, a group that has advocated secession from the United States. (She addressed their party conferences in 1994, 2000 and 2008; her husband has been a registered member for ten years.) The party's founder, Joe Vogler, is a magical fountain of fun patriotic quotes: "The fires of hell are frozen glaciers compared to my hatred for the American government and I won't be buried under their damn flag."

So there you go. Governor Sarah Palin.

I don't feel much better about Palin's behavior as the mother of a child with special needs, either. The fact that she accepted a place on her party's ticket with a five-month-old baby with Down syndrome at the very least suggests that she simply has no idea what a hard road is waiting for her and the level of commitment that will be required of her. In an interview with People, she admitted that she didn't tell her children about her son's Down syndrome until after he was born because she wasn't sure how she felt about it herself.

"Not knowing in my own heart if I was going to be ready to embrace a child with special needs," she said, "I couldn't talk about it."

But that's the thing that didn't make sense to me. Everything I'd read about Sarah Palin suggested that she'd be a terrible choice as a vice president; indeed, she seems like a pretty poor excuse for a governor. But she did choose to have a baby with Down syndrome, and while that makes sense in light of her views on abortion, it also seems to fly in the face of the kind of disregard for disabled children that would seem to drive someone to cut their budget by sixty-two percent. The world is hardly lacking in examples of pious Christians whose opposition to abortion disintegrated as soon as they peed on the stick and saw the little plus sign. As much as it may chap her sanctimonious ass to admit it, Sarah Palin had a choice.

I couldn't escape the feeling that Palin did not seem to be the kind of monster to metaphorically throw special needs kids out on the ice floe and leave them to the mercy of cruel Nature. Perhaps I'm naive; I've certainly heard from plenty of Conservatives in the past year who believe that special education, and particularly mainstreaming, is destroying the educational opportunities for their own neurotypical kids. But still.

So I did a little more reading, and as it turns out, I was right.

So yes, the budget for the Department of Education and Early Development Special Schools in Alaska appears to have been cut by about sixty-two percent between 2007 and 2008. But if you look carefully, you'll see that one program, the Alaska Challenge Youth Academy, disappears from the budget during that time. Dig a little further, and you'll find that it's still there, but now as a separate budget item. So the money didn't get cut after all; indeed, it appears that she actually increased funding for that particular program.

There's a sort of community that exists, or seems to, among parents of special needs children. In the past I've referred to us as Shepherds of the Broken. Like it or not, I have been thinking all week, Sarah Palin just joined that group. She may not know it just yet, but it's a hard journey ahead, and the joy and political expediency of waving her baby in front of the cameras is eventually going to give way to some hard truths. The monsters that afflict our broken children don't care about your politics, and they don't make things any easier on parents who have money and power and handlers.

In her address to the Republican National Convention, a speech that was otherwise puerile and sarcastic (and trust me, I know what I'm talking about; I frequently traffic in puerile and sarcastic, although no one ever hails me as the second coming of Lincoln when I do it), Sarah Palin reached out to her fellow Shepherds:

"To the families of special needs children all across this country, I have a message for you. For years you've sought to make America a more welcoming place for your sons and daughters and I pledge to you that if we're elected, you will have a friend and advocate in the White House."

Well, I don't believe a word of that, but at the very least, I suspect that no matter what happens to Governor Palin, she and I are going to have plenty in common. I hope she's ready. I don't think she is, but then again, not many of us were, and we're still here and still fighting. Sarah Palin, your rubber sword is waiting for you.

American Promise

"You know, this country of ours has more wealth than any nation, but that's not what makes us rich. We have the most powerful military on Earth, but that's not what makes us strong. Our universities and our culture are the envy of the world, but that's not what keeps the world coming to our shores.

"Instead, it is that American spirit -- that American promise -- that pushes us forward even when the path is uncertain; that binds us together in spite of our differences; that makes us fix our eye not on what is seen, but what is unseen, that better place around the bend.

"That promise is our greatest inheritance. It's a promise I make to my daughters when I tuck them in at night, and a promise that you make to yours -- a promise that has led immigrants to cross oceans and pioneers to travel west; a promise that led workers to picket lines, and women to reach for the ballot.

"And it is that promise that 45 years ago today, brought Americans from every corner of this land to stand together on a Mall in Washington, before Lincoln's Memorial, and hear a young preacher from Georgia speak of his dream.

"The men and women who gathered there could've heard many things. They could've heard words of anger and discord. They could've been told to succumb to the fear and frustration of so many dreams deferred.

"But what the people heard instead -- people of every creed and color, from every walk of life -- is that in America, our destiny is inextricably linked. That together, our dreams can be one.

"'We cannot walk alone,' the preacher cried. 'And as we walk, we must make the pledge that we shall always march ahead. We cannot turn back.'

"America, we cannot turn back. Not with so much work to be done. Not with so many children to educate, and so many veterans to care for. Not with an economy to fix and cities to rebuild and farms to save. Not with so many families to protect and so many lives to mend. America, we cannot turn back. We cannot walk alone. At this moment, in this election, we must pledge once more to march into the future. Let us keep that promise -- that American promise -- and in the words of Scripture hold firmly, without wavering, to the hope that we confess."

-- Barack Obama, August 28, 2008

One reason I'm becoming hopeful again, against my better judgement

Speechificationalismness

Okay, I put my keynote address to the Assistive Technology Cluster Conference online.

Please keep in mind that it was delivered to a gathering of special education teachers, speech pathologists, occupational and physical therapists, school administrators and some parents of kids using assistive technology. It was also written with the (probably safe) assumption that most of them had never read the book or this blog, so there's material that may obviously seem familiar to you.

Oh, and also, I had a time slot of over an hour, so if it seems long to you as a reader, imagine how I felt. That's a lot of jabbering for one old man.

Monster Slayers' Ball

Big Head Schuyler (and her Monster)
Originally uploaded by Citizen Rob

Do you want to know a moment when this whole fancy pants book thing felt a little extra real recently? When I made a joke and about five hundred people laughed.

I gave the keynote address at the 2008 Assistive Technology Cluster Conference in Richardson, Texas last week. This is something that has been in the works for a while, and I was excited about it, in a "they want me to speak for how long?" sort of way. Excited, with a "good thing a wore my brown pants" element of terror mixed in.

I don't want to sound like I am tooting my own horn here, but honestly, I think it went really well. They laughed at my jokes (Looking for an easy laugh when talking to special educators? Make fun of No Child Left Behind...), almost no one left while I was talking, no one booed or threw anything at me, and when it was over, some of the people who came up to talk to me had been crying. There's nothing like seeing someone's runny mascara to make you feel like you got it right as a writer. I was more concerned about my delivery than the actual text, but I got through it without stammering too much or dropping any random F-bombs, so all in all, I'm pleased with how it went. Perhaps I'll put it online.

(Edited to add: Done.)

As is usual with this book and the appearances we've made, however, the real star was Schuyler. I put together a PowerPoint presentation (actually, on Apple's very cool Keynote software; imagine Powerpoint's hotter, sluttier sister) that was heavy on the Schuyler images, and that was a wise, if not particularly unexpected, move on my part. When I mentioned Schuyler's ability to communicate her defiance without words, the image on the three big screens got what was probably the best reaction of the whole speech. As hard as I work to represent her in my writing and in my advocacy, Schuyler speaks for herself best of all.

When my speech was over, the organizer of the conference invited Schuyler to come up to the front. In this huge room full of adults, Schuyler looked tiny and fragile to me, but she strode to the front without hesitation in her little black dress and newly-reddened hair, took the microphone and said, with confidence and almost comprehensibly, "Hi everyone!"

And THAT, my friends, was the best part of my keynote address.

The conference itself was fantastic, and very eye-opening for us. They gave us a table in the too-small exhibitors' hall, where we signed books and met teachers and parents and, most importantly, other people who were using assistive technology like Schuyler's Big Box of Words. These were young people with disabilities much more severe than Schuyler's, to the point that they had to struggle many times just to put their words in order. And yet, I don't think I can adequately describe how powerfully affecting it was to watch them navigate on their devices and communicate in full sentences, with complexity and nuance and humor. It gave me, and Schuyler most of all, a lot to consider where her own device usage is concerned.

One of the most fascinating parts of the conference for us was seeing exactly how much work is being done by some very smart people to advance the technology that kids like Schuyler are using. Prentke Romich, makers of the Big Box of Words, were well-represented, as usual. I'm always amazed at the people who work for that company, not just by how smart and committed they are to their work, but also just by the humor and confidence they exude. Two of their reps were device users themselves, and they were kind enough to come talk to Schuyler from time to time on their devices. You can probably imagine how weepy I became, on more than one occasion.

There were other companies represented, and a lot of very innovative technology on display. I came away with a lot of ideas and thoughts, some of which I'm going to share with PRC soon. The whole thing made me think about this in whole new ways.

But most of all, the thing I took away from this conference was an appreciation for the work that all these people are doing. Teachers, therapists, administrators, parents, advocates, all of them. When I looked out at that audience, the thing I felt most of all was humbled (and how often does THAT happen?). I was standing in front of the people who have made it their life's work to help kids like Schuyler.

Early in my speech, I said:

It might be the most striking difference between our experience with the world of broken children and yours. As special educators and experts in assistive technology, you have sought out the monsters. You’ve armed yourselves with the knowledge and the tools to fight them, and you’ve gone into battle with your armor in place. For parents, the monsters have found us, in most cases sitting by the campfire in ignorant bliss, totally unprepared.

There’s a transition that special needs parents go through, and it’s one that I suspect never completes itself entirely. We go from seeing sad stories about kids with disabilities on television and saying "I can’t even begin to imagine how those parents deal with that" to becoming the parents who face it with our kids and for our kids. We learn quickly to conceal our fear, which is very great, and our self-doubts, which are many. We take hold of whatever we need in order to find that extra strength, whether it’s God or friends and family or a good stiff drink, and we draw our rubber swords. When we get to the battlefield, we find… you. You’re already there, our generals and our scouts, and you know the lay of the land. We’re not ready when we get there, not quite, but we will be soon enough. Once we get past our denial and our mourning for the child we always thought we’d have, we devote ourselves to the complicated, broken but equally wonderful child in its place. No one in the world is a quicker study than the special needs parent.

I've learned so much over the past few years, most of it about myself and my own capabilities, and all of it from Schuyler. Being there in front of those amazing people and being able to share my perspective with them was one of the singular honors of my life. And that's the truth.

Memorial Day, 2008

"We are Making a New World" (1918), Paul Nash

At a Calvary near the Ancre

One ever hangs where shelled roads part.
In this war He too lost a limb,
But His disciples hide apart;
And now the Soldiers bear with Him.

Near Golgotha strolls many a priest,
And in their faces there is pride
That they were flesh-marked by the Beast
By whom the gentle Christ's denied.

The scribes on all the people shove
And brawl allegiance to the state,
But they who love the greater love
Lay down their life; they do not hate.

Wilfred Owen (1893-1918)
WWI soldier poet, describing a roadside crucifix damaged in battle

What could I possibly add to this?

(via Gawker)

The John McMullen Show

I survived my first live radio experience with a minimum of anxiety this week. It was a longer interview than I've done before, and a little light on laughs, but he asked some questions that were different from past interviews, so that shook things up a little. Overall, I think the interview went pretty well.

Sadly, there were some weird technical issues that made the actual broadcast almost unlistenable. For some reason, the levels on my input kept getting louder and softer, over and over, as if I were walking around waving the phone like a maniac. In fact, I was sitting at my desk at work, with a minimum of maniacal gesturing, so I can only assume that there was something about my phone that was sabotaging the call. Stupid phone.

I did manage to get a clean copy from a nice person out there, and I went into iMovie and futzed around with the levels to try to minimize some of the weirdness. It still sounds a little strange, but I think it's at least listenable now.

Anyway, here it is.

Is Schuyler a political pundit or a techie futurist?

You talk too much.
Originally uploaded by Citizen Rob

This question was on Schuyler's home work. I'm still trying to decide what to make of her answer.

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New Things

The White House is where the U.S. president lives. Life in this building has changed over time. The White House got its first telephone in 1879. It got electric lights in 1891. An indoor swimming pool was added in 1942. The White House got its first fire alarm in 1965. After that came other new inventions such as computers and cell phone.

1. Make a prediction. What do you think the White House will get next?

Her answer?

"A brain hat."

-----

I asked her about the brain hat. She says it looks like a helmet, hers is yellow and mine is green. "Brain hat help you work."

Where did she get the idea that the current White House occupant needs a brain hat? I guess she's paying attention after all.

Apology

As you'll see when you finally get a chance to read SCHUYLER'S MONSTER, I don't shy away from talking about my own shortcomings as a father. No one's perfect, and sometimes I feel farther from from that perfection than most. And today, I need to address something.

I owe an apology. To Schuyler.

The first time I wrote an article for PajamasMedia.com, I wasn't completely aware of just how conservative their readership was, but if I had gotten a better feel for the site, I probably would have written for them anyway. My own liberal outlook doesn't mean I'm closed to conservatives and their beliefs. One of Schuyler's most adamant and consistent supporters, going back for years, is standing out on the very leading edge of the right wing, his toes dangling happily in the wind. Julie's parents are pretty conservative, and few people do more for Schuyler on a daily basis than they do. One of the themes of my first essay on PajamasMedia, and a big chunk of the book as well, addresses how wrong I was to prejudge the conservatives of Plano in the first place. I don't believe that the issues surrounding special needs parenting fall into partisan ideological areas, any more than the monsters that stalk these kids do so according to how their parents vote.

Nevertheless, after some of the personal comments left on that first essay, I wrote a second essay with some hesitation, and sure enough, the reactions were incrementally worse. I wasn't bothered by the personal attacks this time, either, although I did make an attempt to clarify a few things and also to defend myself against one particularly dishonest remark. (And a reminder to the kids: RESPONDING TO TROLLS IS ALWAYS ALWAYS ALWAYS A MISTAKE.) I was accused of being bitter and rude, as if the opponents of inclusion would happily invite our broken kids into their kids' classrooms, if only we'd just ask politely. I was accused of ignoring the plight of kids whose problem is that they are too gifted for their public schools, which is absolutely true. I certainly don't oppose the same kinds of programs for exceptionally gifted children as for those with disabilities. Not one bit. Why would I? It's simply not my fight, and it's not an issue that I know much about, so I didn't take it on. And best of all, I was even accused on one site of being a wealthy, pretentious snob, mostly because I have a hyphenated last name. Everyone knows that hyphens are plated in gold. I keep mine in a special vault.

But when someone posted at length last night about how my "feeble minded" child was destroying the schools for the rest of the kids, it bothered me. It bothered me even more when PajamasMedia deleted the comment today. The comment was rude, and it was vile. But it wasn't obscene and it wasn't threatening. I feel like perhaps they cut it because they were embarrassed by having one of their readers say something so ugly about a little girl, but I can also accept that they chose to delete the comment because they felt responsible for exposing Schuyler to something like that.

But they're wrong. They're not responsible. I am.

This blog and the upcoming book are going to open the door for all sorts of experiences for Schuyler, and while I expect most of them to be positive, we're prepared for the occasional ugliness as well. But in the case of PajamasMedia, I chose to go back into an arena that I knew from experience was likely to be hostile, and I took her with me. My only excuse is that I didn't think it through, and once again I underestimated the capacity for people to become animals when sitting safely and anonymously behind their keyboards.

Schuyler is a warrior, and she gives her monster a thorough beatdown on a regular basis. I suspect that if she were old enough to understand the worst of what was being said about her online, she'd simply fire up her Big Box of Words and send a two word response (hint: not "happy birthday") before going off to live her life, loudly and unhesitatingly.

Nevertheless, I invited more monsters into her home, and for that, I can only say that I was wrong to do so, and I am very, very sorry.

Harvey does not in fact want to eat you

As an ugly American, I haven't heard of any of the parties involved, including Heat Magazine, but the sentiments are familiar. Make fun of a kid with a disability, get called out for it, issue a heartfelt apology, hope that people start buying your product again.

Heat magazine apologises to Jordan for using disabled son on sticker.

I am a steadfast advocate of freedom of speech, but it's nice to see someone get bitten on the ass for abusing that freedom. Dicks.

Because "separate but equal" worked out so well the first time...

The following was posted on another site, in response to this. While it's unusually blunt, it nevertheless represents a viewpoint that I've heard many times before, in some form or another.

Every special ed kid costs schools more money. They are incredibly expensive. Wealthy parents get lawyers and game the system for millions, and all the rest of the kids get inadequate educations that still cost more money.

They should be removed from the system and their education funded differently. Public schools should be reserved for the "neurotypical".

That doesn't mean they shouldn't receive funding; it should just come from a different pool of money–health care, probably.

When I think back to my elementary school days, and even later, the thing I don't remember is ever seeing any kids with disabilities in my classes. If you're about my age or older, you probably don't, either. They were sent to different places, special schools or institutions or other "alternative facilities" where they wouldn't interfere with the fine education that the rest of us received.

As with anything, there are extremes to be avoided. I wrote about the warehousing of special needs kids (and caught a little flack for it) and how their curriculum needs to be more specific to their disabilities, rather than just dumping them into the mix and wishing them good luck. But that individualized education needs to take place within the context of mainstream schooling.

Schuyler spends much of her day in a regular second grade class, and so does just about every other kid in her Box Class. Most of them have more serious physical impairments than she does, and cognitively, at this stage it's still anyone's guess for most of them, Schuyler included. And yet, as far as I can tell, most of them are thriving in their mainstream environments.

I've seen the looks they occasionally get from a few other parents, and I suspect they get the same thing from some teachers as well. And the thing that I am 100% certain of is this: when people advocate sending special needs kids away to "special schools", they are not thinking about the welfare or comfort of those kids. They are thinking of their own.

Yes, special education is expensive. Good education of any kind is, for that matter. But no matter what your politics, nor how extreme your position within those beliefs, a little socialism isn't going to hurt you, and it is going to help Schuyler and millions like her.

This is my opinion, but one in which I believe so strongly that as far as I'm concerned, it is a Big-F Fact: a society that doesn't take care of its own least fortunate, whether that's the poor or the disabled or whoever, is a society that does not deserve to survive. If we as a civilization can't do better than "Public schools should be reserved for the 'neurotypical'", then we deserve nothing less than to implode on our own selfish appetites and our own primping narcissism. I'll be the first one at the barricades when the revolution begins.

If you believe that you as a citizen have a right to decide that every penny of your tax dollars should go to providing your neurotypical child with the best education possible, and that you shouldn't be expected to help fund programs that do not directly benefit your kid, I'm not sure what to say to you.

Well, yes I am. I hope you take a moment out of your self-absorbed life every so often to thank your God (if you have one) that your kid didn't draw that card, the one that twists their genes or gives them an extra chromosome or stirs their brain chemistry or breaks their bodies. As you ponder your own child and their perfect world where they shouldn't have to share funding with or even look at kids who did draw that card, I hope you understand that inside every one of those unfortunate bodies and minds is a human being, one with aspirations and dreams and abilities just as big as your own kid's.

Bigger, probably, because when you have to fight as hard as these kids fight just to be able to sit in a classroom with neurotypical children, you learn not to take those dreams for granted. And as much as most of them would like to be just like everyone else, I'm proud to say that for most of these kids, there's not a goddamn thing about them that is "typical".

I lost out by not being able to attend school with special needs students. Your little darlings would be just as diminished as human beings if you had your way. Fortunately, I have no intention of allowing you to have our kids "removed from the system". And I am not alone.

"Paths of Glory"

"Paths of Glory"
Originally uploaded by Citizen Rob.

I haven't written about this before now, mostly because I know how my writing about music tends to make crickets chirp and the baby Jesus cry. However, I thought Veterans Day presents a pretty good occasion to explain why I am boycotting the Dallas Symphony Orchestra.

Money concerns force DSO to drop concert

Britten's 'Requiem' 'very expensive'

One of the headliner concerts promised for the Dallas Symphony Orchestra's 2007-08 season is being scratched. Benjamin Britten's War Requiem, which was to have been performed under principal guest conductor Claus Peter Flor, will be replaced by another program because of money concerns.

"We were reviewing the budget for next year, and we determined the need to make a few programming adjustments," says Fred Bronstein, president and CEO of the Dallas Symphony Association. "It's a very expensive piece to produce, and we just determined it would be prudent to postpone it."

You know, I understand that the War Requiem is an expensive piece to perform. It requires a full orchestra, a chamber orchestra, a full chorus, a boys' choir and soloists, and it's still a rental piece. It's modern and difficult and probably not a huge audience draw, although every time I've seen it performed, it has been to a full house.

However, in a time of war, when the message of Benjamin Britten and Wilfred Owen is as relevant as ever before, and particularly in a community as conservative as Dallas, in which support for the president's increasingly unpopular and idiotic war remains inconceivably high, it is, in my opinion, impossible to cancel a performance of this piece without covering yourself in the stink of artistic cowardice.

I mean, the War Requiem didn't get more expensive to perform in the time since it was programmed by the DSO. But the statement that it stood to make about the futility and pity of war? That just becomes more relevant and desperate (and controversial, at least in this town) by the day. The War Requiem is a vastly important work, one that an audience has much to learn from. It represents the very best of what a contemporary symphony orchestra should be trying to accomplish, bringing music of the highest quality and most significant social relevance to a community. Canceling a performance like this one, even for financial reasons (or perhaps especially so) doesn't just disrespect the veterans who have faced these issues in a slightly more harrowing setting than a cushy concert hall. It disrespects art.

Because I have become a grouchy old man, I sent an email saying as much to the DSO back in May. After getting a response from an anonymous Patron Services Center representative (a response that felt like a canned response, which I found to be a hopeful sign since it suggests I'm not the only person who responded negatively), I sent the following, which pretty accurately represents my current thinking about the issue and the responsibility of artists in troubled times.

I did not receive a response. I did not require one.

-----

Subject: War Requiem
From: robert@schuylersmonster.com
Date: May 21, 2007
To: customerservice@dalsym.com

I understand the financial difficulties of putting together a performance like that. But it is also unfortunate and frankly suspect timing that this piece should find itself on the block in the midst of a controversial and politically charged time of war. Britten's piece is divorced of politics, addressing instead the undeniable horror, futility and suffering of war, topics that go beyond politics and patriotism and force the listener, no matter what their partisan beliefs, to look deeper. Regardless of the financial reasons for doing so, canceling your performance of this piece in particular sends a strong message, and not a positive one.

Music matters. The artistic choices that an orchestra makes send a message to a community. If this is a matter of purely financial concern, then I and a great many other will be watching your choice of replacement repertoire with great interest. I wish you the best of luck in maintaining your organization's artistic integrity as you make that choice.

Robert Rummel-Hudson
Plano, TX

Eagerly awaiting the revolution

Sometimes I get email from old skool readers asking why I don't write about politics anymore.

I don't know. I guess I usually just find it easier to stick my finger down my throat...

Programming

Red
Originally uploaded by Citizen Rob.

Julie has been busy lately, working on last minute Harry Potter preparations for the book store where she works as a community relations monkey, so Schuyler and I have been spending a lot of alone time together these days.

Last night Schuyler and I curled up on the couch, just the two of us, and it would have been a really sweet picture if you were to peek in through the window and see us there. I'm not sure if you'd still get the same Normal Rockwell vibe, however, if you could see that we were watching Godzilla versus Space Godzilla.

After it was over, we changed into our sleep clothes and stomped around the living room, destroying imaginary Tokyo and attacking each other. Schuyler stopped in her rampage every now and then to open her mouth menacingly and breath imaginary Godzilla fire, although she ruined the effect by cracking herself up and giggling. Well, that and also by being a four foot tall little girl in very un-monstery Hello Kitty pajamas.

I was driving her to her summer program this morning when she suddenly called out excitedly, pointing out the car window.

"Ah-ee, oo! Eh UH!"

I followed where she was pointing and saw a police car, and that's when I realized what she was saying.

"Daddy, look! The FUZZ!"

"Is that the Fuzz?" I asked. She squealed with delight and clapped her hands at our (until now) private joke.

Judge me if you must for the things I end up teaching Schuyler, both intentionally and otherwise. We're like any parents, we pick our battles carefully, based on our own beliefs and the values we feel are important to pass down. Even if sometimes those values involve nothing more than being a smartass. Especially then, perhaps.

We'll watch some pretty questionable television sometimes, for example. Jurassic Park II: The Lost World was on last week, and I've never seen Schuyler's eyes as wide with wonder as when she watched a T-Rex walking down a quiet suburban street and into a back yard, drinking from the swimming pool and looking into a kid's bedroom window. I can't even begin to imagine how happy she would be to look out her own window to such a sight.

But after one too many trips to the bookstore when she ran straight to the Disney and Barbie sections as if there were no other conceivable book in the world, we stopped letting her watch shows that seem to be little more than merchandise disguised as educational television. So yes to rampaging dinosaurs eating the family dog, but no more Dora the Explor-ah^TM.

She knows that hitting and pushing other kids is wrong, but also that she's got the right to be anywhere anyone else is, with her Big Box of Words by her side. Schuyler knows that when other kids get bossy and start telling everyone what to do, there is no greater fun to be had than to cheerfully break those rules. She wears the punky clothes that she wants, with camouflage and little bead bracelets with pink skull-and-crossbones and red hair that exists nowhere in nature, but she also knows that short shorts and the slutty Bratz attire that is so popular with the North Dallas second grade set these days (WTF?) isn't going to happen, and it's not even worth putting up a fight.

She knows nothing about Jesus (as far as we're concerned, she already has plenty of imaginary friends), and isn't going to find out more until she's old enough to make the distinction between what's fact and what's opinion. She's trusting in a very unsophisticated way at this stage; she will take whatever she is told and process it as Truth-with-a-big-T, and we feel better about her believing in Santa and King Kong and monsters right now. The difference is that fewer people will be insisting that they are real as she gets older, and she's not ever going to be pressured to live her life a certain way because someone told her that it's Godzilla's will.

Most of all, Schuyler has inherited a "Fight the Man" attitude that she is going to need as she gets older and takes on more of her own battles for equal treatment and adequate concessions for her life in a mainstream society.

Being who she is, however, Schuyler infuses that attitude with a charm that her father has never possessed. As we pulled away from the police car this morning, she smiled, gave him a wave, and said "Eye, uh!"

"Bye, Fuzz!"

It's good to be the king.

When I posted excerpts from the Declaration of Independence the other day, I left out the middle part, the whole "here's what the king did to piss us off" section. In doing so, I left out the two best lines:

He has dissolved Representative Houses repeatedly, for opposing with manly firmness of his invasions on the rights of the people.

and...

He has erected a multitude of New Offices, and sent hither swarms of Officers to harass our people and eat out their substance.

I know. I really need to grow up. Don't think I'm not aware of that.

--

"Okay guys, one more thing, this summer when you're being inundated with all this American bicentennial Fourth Of July brouhaha, don't forget what you're celebrating, and that's the fact that a bunch of slave-owning, aristocratic, white males didn't want to pay their taxes."
-- Dazed & Confused (1993)