Event at fancy new Borders, by golly!

SCHUYLER'S MONSTER
Originally uploaded by Citizen Rob

Signing and Discussion

October 4, 2008
4:00 pm
Borders Books and Music Watters Creek
965 Bethany
Allen, TX 75013
214-383-9676

Part of Educators Appreciation Weekend

---

Borders Books and Music Watters Creek
Schedule for October 4th

11:00 am - Special Kids Story Time with activity provided by the City of Allen

12:00 pm - Live radio show and book signing with Kim Snider, author of How To Be the Family CFO

2:30-4:00 pm - Book signing Sarah Goodall, author of The Palace Diaries
and Lady Colin Campbell, author of Empress Bianca

3:00-6:00 pm - Bounce House (located outside)
Provided by Fire House Bounce

4:00 pm - Signing and Discussion with Robert Rummel-Hudson, author of Schuyler's Monster

7:30 pm - Musician Mark Shelton

Baby Monster

Three little monsters
Originally uploaded by Citizen Rob

Not being a teacher or having any experience with kids other than my own (other than being a former child myself), I'm not sure if she's at the appropriate age for this, but Schuyler has become fascinated with babies. More to the point, she's become fascinated by the fact that babies start off in their mother's tummies.

Oh yeah. That's the conversation we've been having. This one I've left mostly to Julie.

You might remember that Schuyler has two monsters that she loves above all her others (with King Kong being the possible exception). They are from Star Wars, known in nerdspeak as "rancors", although if you are Schuyler, they are Sam and Margaret. (She asked me to name the second one; readers of my book will enjoy my choice.) I think she believes they are Cloverfield monsters, but now they've become her friends. And, as she was careful to note, they don't eat their friends. (Everyone else is presumably screwed.)

Sam and Margaret have been boyfriend and girlfriend for a while, but recently, Schuyler has begun referring to them as the mommy monster and the daddy monster. And of course, she keeps asking if Margaret has a baby monster in her tummy.

Um.

I wasn't sure how to deal with this; she's not even nine yet. But it seems really important to her, and so I've been trying to come up with something. And the thing is, I know that just about any bug-eyed monster toy would do. But as much of a slob as I can be in just about every aspect of my life, I am weirdly OCD when it comes to Schuyler. I have Issues.

Well, thanks to a line of Star Wars toys aimed at younger kids (although, perhaps predictably, coveted by thirtysomething Mom's-basement-dwellers who are making it hard to find except on eBay, ouch ouch ouch), a perfect answer presented itself.

If I can find one, I do believe I may have found Baby Monster.

Peeper Caper

Purplicious
Originally uploaded by Citizen Rob

We thought Schuyler lost her new glasses last week. We talked to her teachers and to the people who run her after school program, and we tore her school apart for two days looking for them. We managed to narrow down the time when they were lost, between her last class and the beginning of her after school program. The woman who runs the program insisted that Schuyler didn't have them on when she arrived, and despite the fact that there are probably a hundred kids in that program arriving at roughly the same time, we believed her.

I'm ashamed to say that it was only two days after they went missing that I took Schuyler for a walk around the school, asking her what she did with them. She'd originally told Julie that she took her glasses off in the gym, and when I asked, Schuyler's story didn't change. This time, rather than getting any input from anyone else, I just let Schuyler show me what she did.

Quietly but with an air of certainty and even relief that she was finally being taken seriously, Schuyler again said she took them off in the gym and then showed me where she took them, to where her backpack was left every day with the rest of the kids'. She showed me how she took her glasses off and placed them in the hard, clam-shell case and slipped them into the mesh side pocket of her backpack, snug bug visible. And when she returned for them, they were gone.

I feel bad for not listening to her more closely; in my defense, it was the first time I'd been there with her, and Julie got distracted early on by the insistent protestations by the program head that Schuyler absolutely did not have her glasses on when she arrived. I feel bad about it, because based on what Schuyler says and on the unlikelihood of that big purple case just vanishing into thin air during a walk down one hallway between classes, I now don't think Schuyler's glasses were lost.

Yeah, I think they were probably stolen.

The older I get, the more I realize that while I once thought I liked kids, it is becoming increasingly clear that really, I probably only like my own.

Shameless request for help

Monster & Monster
Originally uploaded by Citizen Rob

Okay, so I just found out that I have, um, very little time to turn in any typos and edits to St. Martin's Press for the paperback. So if you have read my book and you saw anything that jumped out at you as wrong or weird, please drop me a line or leave a comment. You'll have my eternal gratitude, which is probably worth more than your stock portfolio at this point, right? Am I right?

I promise, I'll post something real soon, maybe later today. Lots to talk about regarding Schuyler, the love of my life, my little mermaid princess, my reason for living, as soon as I drive to her school and look for the new glasses that she lost. After a week and a half.

Ten days. Yeah.

I made the DaFoWo Show!

Okay, I'm going to geek out a little now, because this is actually my favorite web program, and I got some serious screen time on it. (I'm about three minutes in.) It's a weekly webcast sponsored by the Fort Worth Star-Telegram, featuring Kristin Campbell and John Metz, who do the hosting, the writing and the very fun editing. It focuses on local Fort Worth/Dallas content, but I don't think there's a lot of inside humor. Go check out some of the older shows, too, at www.dafowo.com.

Anyway, thanks, Kristin!

Prodigal Son Revisited

(The Shorthorn: Michael Rettig)
Originally uploaded by Citizen Rob

You know, there's been a lot of different press for Schuyler's Monster, from public radio to television to articles in newspapers like The Dallas Morning News and magazines like People and Wondertime and Good Housekeeping, and yet there's nothing quite like seeing your face in your old college newspaper:

The UT Arlington Shorthorn - Robert Rummel-Hudson to speak at library

I'm not sure why it's always such a big deal to me, just like I'm not sure why I'm so nervous about my address at the university tomorrow night. I suppose it's the juxtaposition between whatever success I've achieved with this book and in my life as Schuyler's father with whatever abysmal expectations I probably set when I was a student.

I mean, I'm not sure how many people read about me in People and said, "Hey, wow, I thought he'd be in jail by now, or maybe working the window at Taco Bell. Good for him..."

Plugga-lugga-lugga

Don't forget the exclamation point
Originally uploaded by Citizen Rob

The Friends of the UT Arlington Library

cordially invite you to a presentation

"Fighting Monsters with Rubber Swords"

By Robert Rummel-Hudson

author of the new book Schuyler's Monster
(St. Martin's Press, 2008)

Friday, September 12, 2008
7:30 p.m.
6th Floor Parlor
UT Arlington Central Library

R.S.V.P. by September 11
at 817-272-7421 or bwood@uta.edu

Robert Rummel-Hudson is communications coordinator in the University of Texas at Arlington School of Architecture. Rummel-Hudson spent his early years growing up in the West Texas town of Odessa. He attended UTA, studying music and English. During this time, he worked as a professional freelance trombonist and music instructor. At the age of twenty-nine, he left it all behind and moved to Kalamazoo, Michigan, to marry Julie Rummel. A year later, they had a daughter, Schuyler Noelle, and moved to New Haven, Connecticut, to work for Yale University. It was at Yale that Schuyler was diagnosed with Bilateral Perisylvian Polymicrogyria, a neurological condition that left her unable to speak.

Robert, Julie and Schuyler now live in Plano, where Schuyler attends a special class for children who use Alternative and Augmentative Communication devices. Rummel-Hudson's first book, Schuyler's Monster: A Father's Journey with His Wordless Daughter, tells the story of raising a little girl with a disability and learning to become the father she needs. The book was published in 2008 by St. Martin's Press.

An autograph party will follow his presentation to the Friends.

The best job ever

Seriously. Getting to chase kids around the museum? I'd only require the assistance of someone to keep me from slipping in the little pee puddles left behind.

Also? I'd be Schuyler's hero. For life.

(My apologies if you came here looking for political content. If it makes you feel better, you can pretend it's John McCain at a campaign stop.)

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

Like a Father

Hudson boys
Originally uploaded by Citizen Rob

It all started with an email from my brother, with a link, some quoted material, and a question.

"Do you remember this guy?"

I'm not going to quote it directly. After I contacted the poster, identified myself and asked if we might talk, I received a delightful message from the board administrator, reminding me in that all-too-familiar "master of my online turf" way that posts on his forum were protected by copyright and could not be used in my next book without permission.

I am actually aware of how that works, oddly enough. And yet, I was tempted to quote it here in its entirety just the same. I feel a certain amount of personal ownership over the information. Go read it yourself and see if you can figure out why.

If you can't go see that, or if it disappears for some reason (although I guess that might solve the whole copyright issue), here's a short paraphrase of the material, posted on an epilepsy support forum in a thread about personal heroes.

The poster, whom I'll call David since, well, that's his name, tells the story about the hard days he experienced in junior high school. In addition to his health issues, David didn't know anyone at his new school and got picked on a great deal. He was eventually taken under the wing of the ninth grade track coach, who made him the manager for the track team. David described this coach as a real friend. The coach taught him everything he needed to know about being a track manager, was patient with his mistakes, gave him advice and even paid for his meals on road trips. This coach, he said, "became my second father". David's story ends sadly, when the coach died halfway through the year. At the funeral, the coach's wife told David that her husband always spoke of him like a son, and made sure that the pastor talked about him during the eulogy. At the end of the year, David won an award for the student who had the most success in the ninth grade, thanks to the nomination of his track coach and surrogate father.

And that, he concluded, is why his personal hero is Coach Bobby Ray Hudson.

Well. I didn't see that coming.

For the record, my answer to my brother's question was no, I didn't remember this guy, for a number of very good reasons. First of all, I was in college by this time. I hadn't seen my father in about four years; indeed, I wouldn't see him again until the funeral, which I don't suppose actually counts.

Furthermore, I didn't hear about my new little brother from my mother because she's not the wife that David is referring to. That would be the woman my dad married after he left my mom when I was in high school. None of us actually knew very much of what was going on in his life, because he had very intentionally and meticulously removed us all from his reality. After he died, we discovered just how true that was. His last will and testament stipulated that everything was to go to his new wife, which was hardly a surprise, but in the event that she did not survive him, everything would then go to her adult son, a police officer whom we didn't even meet until the the day before the funeral.

It's been eighteen years since my father died, and yet I find that he still has the power to confound me. After going to such great lengths to shed his family, why, at the very end of his life, did he suddenly feel compelled to be the kind of father that he never was before? Did he feel regret? A chance at some kind of redemption, but without the hard work it would have taken to make things right with us?

I never knew my father to be someone with a great deal of compassion, certainly not for the little six-year-old boy with whom he couldn't communicate except with the back of his hand. Had he found it at the end? I'd always wondered what my father would have thought of Schuyler. Judging from what I knew of him, I always suspected that he would have had a real problem dealing with a kid with a disability. Now? I'm not so sure. This chance encounter with a total stranger almost two decades after my father's death has changed everything.

I am acutely aware of the timing of this revelation, at a time when I am beginning work on a book about this very topic. Some writers search with great effort for their subjects. So far, mine seem to be finding me.

Priorities

According to CNN, human rights organizations are reporting that more than 200,000 children were spanked or paddled in U.S. schools during the past year. My own state of Texas leads the pack, with 48,197 students. Well, of course it does.

Now, we can have the discussion about the morality and effectiveness of hitting kids if you like. I'm always ready for that topic, after all. I am very encouraged by the fact that the numbers are down, and that a number of states and school districts have outlawed corporal punishment altogether.

But one line in this report jumped out at me, hiding about halfway down.

In addition, special education students with mental or physical disabilities were more likely to receive corporal punishment, according to the ACLU and Human Rights Watch.

Even if you're one of the people who think that hitting a child is a good way to discipline and to educate, or perhaps especially if you believe that, I'd like you to stop for just a moment and think about that. I'd like for you to close your eyes and imagine how that scene might unfold.

Meanwhile, what's the topic of the most vocal outcry from disability advocates of late? The use of the word "retard" in a movie.

I don't know. To my thinking, those priorities seem sort of, well, you know. There's probably a word for it. I'm sure you can think of one.

Pet monsters are a lot of responsibility

Ice Girl, Ice Daddy and Ice Bat
Originally uploaded by Citizen Rob

Okay, so let's talk about People First Language.

I've seen it presented as a sort of universal truth, as if the rightness of People First Language is a given, with little room for argument. People First Language must be used, I read time and time again, like a moral imperative. The heartfelt and dedicated advocates of People First Language want very much for it to be accepted as a standard practice. Indeed, they often insist on it. But it's not universally accepted, although people who find it troubling are often nervous about discussing why. I'm a little nervous about writing this, to tell the truth, and we all know what an ass I can be.

The idea behind People First Language is simple, and inherent in the name of the concept. It puts the person first, allowing their basic existence to define them before their disability. People First Language describes what the person has, but not who that person is. By these rules, I am not a diabetic. I am a guy who has diabetes. The thinking behind People First Language says that identifying a person by their diagnosis can generate fear and pity, and works against the goal of inclusion. People First Language grants a person dignity, the thinking goes, by blunting the impact of their diagnosis on that person's self-image, and also in how they are perceived by the world.

"It's not 'political correctness,'" writes People First Language advocate Kathie Snow, "but good manners and respect."

Perhaps. I do see the point, and insofar as I think these kinds of perceptions are important issues, I can see some of the benefits of People First Language. I don't want Schuyler to be hurt by the world around her, and I certainly don't want her disability to make her feel like there's something wrong with her.

But here's the thing. As hard as it may be to admit this, there is something wrong with her. And admitting that she's broken on some level is difficult, and it feels harsh. But it's a harshness that comes from somewhere else, from whatever power you think hands out that kind of Very Special Gift. God if you believe in him, Fate if you don't, or just random shitty luck if that's how you roll. And the thing that it's easy to miss, because the idea breaks my heart too, is that no one is more aware of Schuyler's disability than Schuyler herself. When you think about it, that seems obvious, but for those of us who love her and care about her, it might be much easier to accept if we could adopt language that takes some of the sting out of her reality.

People First Language attempts to soften the language that we use to describe disability, and I understand why that's tempting. But in doing so, it doesn't blunt the monsters, not even a little. If you say, as People First Language instructs, that a paraplegic is NOT confined to a wheelchair or is NOT wheelchair-bound, but instead refer to them as "an individual who uses a wheelchair", you have taken away that wheelchair's power over that person in perception only. It even implies choice, at least in my opinion. I use things, and I use parts of myself, with intent. I don't think I'd say I use my heart, or my kidneys, because I am not given a choice, but I do use my legs. I choose to use them, and I can choose not to.

That sounds like I'm being obvious and glib, but it bothers me, and for some very real reasons. Because when you take away responsibility from the monster, who are you going to give it to? When you say that a person uses a wheelchair, you are setting up ownership of that disability. The monster doesn't have you. You have the monster.

But do we really want to hand ownership of that disability to a child who is struggling to understand their place in the world? Does handing responsibility for a disability over to the child give them an unreasonable sense of their own role in the possession of that disability? If you're using a wheelchair, then why not just stop? If that sounds silly to you, ask a now-grown child of divorced parents if they still, even if only in their secret hearts, take some measure of responsibility for their parents' breakup. Ask an adult with a disability if they ever wondered as kids what they did to deserve their situation. Ask them if they ever wonder that now.

If Schuyler isn't "non-verbal" but instead "communicates with an assistive technology device", then why? Why would she do that? If Schuyler doesn't feel like she is in the clutches of a monster to whom she brings the fight every day, that's great and my biggest dream made real. But if she then comes to the conclusion that she owns that lack of speech, then what can be the reason for its persistence? Is she not trying hard enough? Why isn't she fixing the issue herself? If she's not broken, then what's the problem? Lack of motivation? Is she simply not good enough? Not strong enough, or smart enough, or brave enough?

Schuyler as the victim (another word forbidden by People First Language) of Fate and its monster minion, as sad as that may sound, is infinitely preferable to Schuyler as the product of her own subtly-implied failure. I simply won't have it, any more than I'll have the idea of "acceptance" stand in the way of her hard work, and of ours. To my thinking, People First Language sets up an unreasonable expectation, taking the responsibility away from unfair forces at work in the world and instead laying it squarely at the feet of the very last people in the world who deserve to wonder if they somehow had this coming.

And don't even get me started on the ridiculous and unwieldy term "nondisabled" to describe neurotypical or "normal" people. That should offend anyone who loves the English language.

Listen. I get why people use People First Language. I understand the push to bring sensitivity to an often cold world. That's something I fight for as much as anyone else, after all. I wrote an entire goddamn book about it. But please try to understand, people. Don't just try to make it feel better. Don't blur the lens, don't make pretty words do the duty once performed by ugly ones.

"Retard" is an offensive term, I think we can all agree. But in its own way, I find "differently abled" or even "special" to be far worse, because they minimize the struggle. They allow the rest of us to sigh and wipe away a tear while we watch some very touching report on the Today Show, and then say "Wow, thank you Meredith, for showing me the story of that brave little trouper!" And then we go on with our lives, knowing that someone is watching out for that precious little angel. Someone like Jesus, perhaps, or one of his dedicated soldiers on earth.

Or someone like me. Or you. Or no one at all, no one except the person who lives their life confined to a wheelchair or suffering from a debilitating condition that makes a nightmare out of the things that you and I take for granted, the everyday tasks and activities that give us our humanity, and can rob us of it when they are taken away.

I helped Schuyler take a preliminary eye test today, in anticipation of an hour-long appointment later this week for the glasses that she'll apparently be getting soon. I held her device for her while she identified the letters on the wall that she could read. She did a great job, and I was incredibly proud of her. She's making her way in the world, and she'll continue to do so with determination and enthusiasm and even optimism, but she'll also do it with a big dose of "fuck you" when needed. And she's not going to get that from People First Language. Kind words aren't going to open any doors for her, not a one. They might simply make her feel like a failure for being unable to open them herself.

Ultimately, People First Language feels to me like it exists not so much to help broken children like Schuyler, most of whom I suspect are tougher and more pragmatic than the people who love them perhaps realize. I think it works mostly for the people around them, those of us who aren't afflicted and yet lead lives forever changed by disability.

People First Language probably makes that life a little easier for the rest of us to bear, but honestly, I'm not sure it should be easier for us. In that respect, I'm not convinced that People First Language is putting the right people first.

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.

The girl in the window

The Girl in the Window (St. Petersberg Times)

I don't have much to say about this, really. I'm not sure what there is to say. But I thought this was important, and if you trust my judgment and if you have ever been touched by Schuyler and the strange, internal world that she sometimes occupies but now has the tools to leave when she wants, then please go read this story, of a little girl who lives in that world permanently, and the horrible reason she got there in the first place.

(via Dooce)

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UPDATE, 8/13 - They've posted a follow-up article.

Passing of a Perpetual Exile

Aleksandr Solzhenitsyn
(1918-2008)

I've always had a deep love of Russian culture and history, and I have always counted three great contemporary Russians among my own personal heroes. Dmitri Shostakovich died in 1975, and Mstislav Rostropovich died last year. News from Russia tonight; Aleksandr Solzhenitsyn has died at the age of 89.

I won't go into the particulars of Solzhenitsyn's legacy. The New York Times obituary I linked yo above is a pretty exhaustive one, and if you're not familiar with Solzhenitsyn, I hope you'll take some time to read it. Neither A Day in the Life of Ivan Denisovich nor especially The Gulag Archipelago are easy summer reads; indeed, I can't imagine very many people outside of Russia have read Gulag in its entirety. But you don't have to read much; like Holocaust history, the story of Stalinism (which hardly died with Stalin, or is dead even now) and the Russian terror state is probably too big for one person to encapsulate it. But Solzhenitsyn must have come close.

For me, there are two great chroniclers of the cruelty of life in the Soviet Union. Shostakovich showed us how it felt, and Solzhenitsyn told us how it was. The world is infinitely the poorer for his passing.

That one percent feels like a universal truth

When I've got some time, I'm going to write about the conference at which I spoke yesterday, which was an amazing and eye-opening experience, for Julie and me both but particularly for Schuyler.

Until then, however, I wanted to share something exceptional that I read this morning, a post on Jennifer Groneberg's blog. It seemed especially appropriate, given recent sobering events in the special needs community.

Among other things, it addresses fear, and does so in an unblinking way that really resonated with me. I am always happy to have the discussion about gentle terminology and inclusive language (which has come up again, not surprisingly), but this is a good example of exactly why I prefer direct language. Sometimes the monster is just plain scary, and calling it something besides a monster just doesn't do the job.

Thanks, Jennifer, for posting this.

"Hard times give me your open arms..."

Sometimes sadness feels distant, like Third World suffering. And then there are the times when it hits close to home.

Noted writer and special needs advocate Vicki Forman unexpectedly lost her son Evan this week. The subsequent torrent of sorrow and shock that have been moving through the online community of special needs parents and advocates speaks to the immediacy of Vicki's writing and the positive effect that she and her son have had on others who are trying to make their way in a world of silent monsters.

It also speaks to the quiet fear that so many of us carry through our lives. After I left a heartfelt but probably inadequate message on Special Needs Mama expressing my condolences, Vicki was kind enough to write to me. In her message, she mentioned the thing that we both knew already, the thing that all parents of special needs children know but rarely speak of, even amongst ourselves. It exists behind the inspirational stories and the moments that allow everyone to believe that strong people who fight the good fight will always triumph in the end. She referred to it as "a vulnerability that is unmentionable," and in Evan's case, it became more than he could bear.

It lurks, the biggest monster of them all. It watches and it waits, and sometimes it takes advantage of that moment of vulnerability. What it leaves behind in the short term is chaos. It leaves fear and a cold truth for those of us who live our lives, even on the best of days, casting brief but troubled looks over our shoulders. And for parents like Vicki, it leaves a pain that I can't even begin to imagine, although of course I've imagined it plenty over the last five years.

The thing is, however, it doesn't end there. People who have known me for years can attest that I am not the same person I was before Schuyler came into my life. Most parents are changed by their kids, but I'll go out on a limb just a bit and say that the parents of broken children are changed even more profoundly than most. Evan was just about Schuyler's age, and the years that Vicki and her family had with him have undoubtedly left them all different people than when they began this trip together. In Vicki's case, her writing and her advocacy over the years have allowed Evan to change a lot of people as well. I hope that when the pain has dulled a little bit, she'll see just how much he left behind, and what a legacy she has allowed for him.

As cliched as it may sound, that's how kids like Evan never die. Small comfort today, but true nonetheless.

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Contributions in memory of Evan Kamida may be made to:
The Pediatric Epilepsy Fund at UCLA
Division of Pediatric Neurology
Mattel Children’s Hospital at UCLA
David Geffen School of Medicine at UCLA
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