If you're here, you get it. You're almost certainly part of the club. You have a disability, or your kid has one, or someone you love or work with. We may not have anything else in common, but the thing that we do share isn't small. When I come here and I write about Schuyler or my own fears and triumphs as a parent, you might say that I'm right, that sounds exactly familiar. Or you might say I'm full of crap. But you're probably never going to say "Oh, that never occurred to me." Because if you're in the club, there's very little that hasn't occurred to you, often in the middle of the night when the shadows are long on the ceiling and the future grumbles softly under the bed.
Schuyler is my weird and wonderful monster-slayer. Together we have many adventures.
Showing posts with label my big opinions. Show all posts
Showing posts with label my big opinions. Show all posts
May 13, 2013
One Small Light
Today at Support for Special Needs:
May 8, 2013
No Heroic Measures
Before I take up the baton and add my perspective, I want to direct you to this essay at Sea Change Ripples, written by a good friend whose thinking on disability issues has both paralleled and influenced my own. This most recent essay is an important one, addressing the tendency of professionals who work with the disabled to receive hyperbolic accolades, and more importantly, to eventually believe their own hype. It's an important point, and I'd suggest that it also applies to parent advocates. And fancy pants authors.
Hero. It's a word that gets thrown around rather freely, particularly in the disability community. You read about hero teachers who change the world for a kid. You read endless stories and remarks about hero parents who do things that other parents say they could never do. (This is bullshit, by the way. No one is ready to do what special needs parents must do. You learn how, usually through screwing up dramatically, you figure it out, and you do so in a hurry because who else is going to do it? You figure it out and become a "hero", or you put a hose in the tailpipe of your car in the garage and you give up. Most of us heroes choose the first option, for some reason. Well, that's what makes us so heroic, right?) You read about heroes in the community who do heroic things like daring to treat someone with a disability like a human being who has intrinsic value.
We seem to have set a pretty low bar for heroes.
I think perhaps the most troubling use of that term is also the one that is the easiest to embrace. The heroes aren't those of us who care for kids with disabilities. At best we are sidekicks, or the eccentric scientist who creates crazy cool tools for Bruce Wayne. But he's still the guy who has to take those tools and go be Batman. If anyone is a hero, it's the child with a disability who steps up and perseveres and overcomes obstacles, right?
Except it's not that simple. It's not that heartwarming, and while it might make for a sweet story on the Today Show, you can decide for yourself if one more piece of inspiration candy ultimately represents a positive step forward.
Kids like Schuyler aren't heroic. They aren't "differently abled" (unless they can fly or shoot lasers out of their eyes). They aren't here to teach us how to be better people or to show us the way to God, although they most certainly do both those things. Schuyler wasn't born to turn me from an asshole to, well, perhaps somewhat less of an asshole. Her existence isn't predicated on her ability to inspire others. She does these things, but she does so largely without trying, and without any responsibility or expectation.
Schuyler doesn't want to be a hero. She wants to be a Schuyler.
Kids like Schuyler ultimately forge their life's path for themselves, either with the help of good people or despite the machinations of bad ones. That effort can look heroic. It can require years of patience, and feats of herculean personal strength. Able bodied people can look at that effort, and we can see heroes. But it's important to remember that when we do this, we are unintentionally making a statement, to ourselves and to the world and to our kids.
We are setting them apart. We are identifying them as different, and even if in our eyes that difference is a good thing ("heroes!") rather than a thing of pity ("people who are less"), it's still an isolating difference. Kids like Schuyler face the fact that they are different every day of their lives. Some of them simply feel different; others feel broken. And the hard truth is that both of those things are probably true.
Kids with disabilities aren't engaging in heroics. They are engaging in life, striving for the things that make us all human, even if they are different, even if they are impaired, and even if they are broken. When we fetishize that work, when we elevate their daily struggles into heroics, we miss the opportunity to give them places at the table. We give adulation when the most valuable thing we can offer instead is authentic relationships.
Superman is a hero, but does he have any friends? He's a superhero, even, but can he have those authentic friendships if he's not perceived as human? (He has his "Super Friends", true. But it's important to note that they, too, are superheroes. Outsiders. Heroes set apart.)
Does that loaded word, "hero", accomplish anything positive, or are we better off without it altogether?
Now, having said all that, I must confess something, a weakness stemming from fatherhood and perhaps from overbelief. I recognize the folly of the hero concept, but I don't always push it as far away as I should. I know better, but the honest truth is that sometimes Schuyler can feel a little like a hero to me. That's not just because she was given a brain that is literally about three quarters broken and yet she's ambulatory and smart and funny as hell and a swell percussionist and a natural poet. She didn't decide to make that busted brain work despite itself. That was just one of those inexplicable miracles of science.
Sometimes, though.
Sometimes I watch how she navigates the crap hand she was dealt, and it doesn't look all that bad to me, not the way she does it. Not all the time, or honestly even most of the time, but in those Chumbawamba moments when she gets knocked down and she gets up again. I don't always see how she does it, and I wish I had those deep wells from which she draws, the ones that power her through the hard spots, which are many. I feel that way even when I realize, very occasionally, that perhaps I do possess those deep wells after all.
Schuyler isn't a hero, and she shouldn't be lauded as one, lauded and separated and ever so slightly dehumanized. She's not differently abled, she isn't a special little angel of God, and she's not doing things that any other kid wouldn't try to do if placed in a similar situation.
She's not a hero, but she is a remarkable human being. If I absolutely required the services of a hero, I suppose she would do in a pinch.
Hero. It's a word that gets thrown around rather freely, particularly in the disability community. You read about hero teachers who change the world for a kid. You read endless stories and remarks about hero parents who do things that other parents say they could never do. (This is bullshit, by the way. No one is ready to do what special needs parents must do. You learn how, usually through screwing up dramatically, you figure it out, and you do so in a hurry because who else is going to do it? You figure it out and become a "hero", or you put a hose in the tailpipe of your car in the garage and you give up. Most of us heroes choose the first option, for some reason. Well, that's what makes us so heroic, right?) You read about heroes in the community who do heroic things like daring to treat someone with a disability like a human being who has intrinsic value.
We seem to have set a pretty low bar for heroes.
I think perhaps the most troubling use of that term is also the one that is the easiest to embrace. The heroes aren't those of us who care for kids with disabilities. At best we are sidekicks, or the eccentric scientist who creates crazy cool tools for Bruce Wayne. But he's still the guy who has to take those tools and go be Batman. If anyone is a hero, it's the child with a disability who steps up and perseveres and overcomes obstacles, right?
Except it's not that simple. It's not that heartwarming, and while it might make for a sweet story on the Today Show, you can decide for yourself if one more piece of inspiration candy ultimately represents a positive step forward.
Kids like Schuyler aren't heroic. They aren't "differently abled" (unless they can fly or shoot lasers out of their eyes). They aren't here to teach us how to be better people or to show us the way to God, although they most certainly do both those things. Schuyler wasn't born to turn me from an asshole to, well, perhaps somewhat less of an asshole. Her existence isn't predicated on her ability to inspire others. She does these things, but she does so largely without trying, and without any responsibility or expectation.
Schuyler doesn't want to be a hero. She wants to be a Schuyler.
Kids like Schuyler ultimately forge their life's path for themselves, either with the help of good people or despite the machinations of bad ones. That effort can look heroic. It can require years of patience, and feats of herculean personal strength. Able bodied people can look at that effort, and we can see heroes. But it's important to remember that when we do this, we are unintentionally making a statement, to ourselves and to the world and to our kids.
We are setting them apart. We are identifying them as different, and even if in our eyes that difference is a good thing ("heroes!") rather than a thing of pity ("people who are less"), it's still an isolating difference. Kids like Schuyler face the fact that they are different every day of their lives. Some of them simply feel different; others feel broken. And the hard truth is that both of those things are probably true.
Kids with disabilities aren't engaging in heroics. They are engaging in life, striving for the things that make us all human, even if they are different, even if they are impaired, and even if they are broken. When we fetishize that work, when we elevate their daily struggles into heroics, we miss the opportunity to give them places at the table. We give adulation when the most valuable thing we can offer instead is authentic relationships.
Superman is a hero, but does he have any friends? He's a superhero, even, but can he have those authentic friendships if he's not perceived as human? (He has his "Super Friends", true. But it's important to note that they, too, are superheroes. Outsiders. Heroes set apart.)
Does that loaded word, "hero", accomplish anything positive, or are we better off without it altogether?
Now, having said all that, I must confess something, a weakness stemming from fatherhood and perhaps from overbelief. I recognize the folly of the hero concept, but I don't always push it as far away as I should. I know better, but the honest truth is that sometimes Schuyler can feel a little like a hero to me. That's not just because she was given a brain that is literally about three quarters broken and yet she's ambulatory and smart and funny as hell and a swell percussionist and a natural poet. She didn't decide to make that busted brain work despite itself. That was just one of those inexplicable miracles of science.
Sometimes, though.
Sometimes I watch how she navigates the crap hand she was dealt, and it doesn't look all that bad to me, not the way she does it. Not all the time, or honestly even most of the time, but in those Chumbawamba moments when she gets knocked down and she gets up again. I don't always see how she does it, and I wish I had those deep wells from which she draws, the ones that power her through the hard spots, which are many. I feel that way even when I realize, very occasionally, that perhaps I do possess those deep wells after all.
Schuyler isn't a hero, and she shouldn't be lauded as one, lauded and separated and ever so slightly dehumanized. She's not differently abled, she isn't a special little angel of God, and she's not doing things that any other kid wouldn't try to do if placed in a similar situation.
She's not a hero, but she is a remarkable human being. If I absolutely required the services of a hero, I suppose she would do in a pinch.
April 28, 2013
"...and I just want to go with you..."
Mothers and fathers have very different relationships with their children. I would never try to describe Schuyler's relationship with her mother, mostly because it's not my story to tell, and I don't understand it all that well myself.
As she grows older, I like to think that Schuyler's relationship with me becomes easier to comprehend, although that's not a given. It's certainly stronger now than it's ever been, which to the parent of a teenager is a very welcome surprise. And yet, it is still very much true that our best moments come in wordless appreciate of each other. We curl up together on the couch and watch terrible monster movies, or play games together on her iPad, or wait outside in the morning air for her bus. Quiet moments sometimes, rowdy at others, but always with an indescribable ease, and the sense that we'll always have each other, no matter what comes our way. This is a great comfort to us both, even if it's fiction. Which it probably is.
She calls me Daddy-O. I call her any number of nicknames. Schuyler Bear. Spacemonkey. Chickenhead Jones. We call each other "Big Dummy" in public places, attractive disapproving looks. Which is fine; that's probably why we do it. We step on the heels of each others' shoes when we walk through stores. We are incapable of walking past toy lightsabers without slicing each others' heads off. We share waffle fries, but she always gets the end pieces, which we call "potato butts". When I ask her if she wants to eat a butt, she always says yes. Burps are always appreciated for their merit. Farts are always funny.
The more I learn about self-advocacy for people with disabilities, the more I feel like I learn from Schuyler's interactions. She does so much communicating, so much of it in ways beyond traditional verbal expression. Talking with Schuyler means taking in so much that is spun out of her wild gestures and her expressions and the tattered remnants of her sign language. Schuyler can be easy to follow sometimes, and yet get her on the phone and she becomes almost impossible to understand, even for those of us who live with her. Schuyler's language is an amalgam of all the ways we all try to make ourselves understood, but it works in a way that is entirely her own. Understanding Schuyler means paying very close attention to her. And that close attention is rewarded, not just in communication but in a kind of intimacy, a closeness that she delights in.
I'm overprotective of Schuyler, even when I try not to be, when I know that she'll be better for taking flight on her own. I let people into her life very sparingly. Sometimes I regret it wildly; most times, she grows from the friendships she makes and I guess I do, too. I watch Schuyler try to navigate her own friendships with kids her own age, and I wish I could make it easier for her, but of course I can't.
There are times that I see something else in Schuyler, something familiar. I watch dark shadows cross her eyes, and I see her frustrations rise at simple obstacles. I observe her need for solitary time, not playing or reading but simply watching videos on her iPad or just sitting. I recognize some of it. I know that we all have our own little monsters, and I fear that polymicrogyria isn't the only one I've given to her. I was probably Schuyler's age when I became aware of my own sadness, the kind that arrives on silent feet and turns the room upside down. I've never done a very good job of managing it, although I've started getting help with it. We're making sure that Schuyler gets help, too. I'm not sure if I'm entirely past my skepticism of that help, but for her, it's a given. She's got a lot that she needs help with. That's not one that she needs to face alone.
We talked about it yesterdayday, when she noted that I seemed a little sad. I explained how for some people, sadness just kind of happens, and it's a thing that we deal with as best as we can. It's just something that happens inside our brains.
"Like my little monster?" she asked. When I said yes, she said "You have a little monster, too!" She was extremely pleased at this, for reasons that both defy explanation and yet make perfect sense.
I don't know if Schuyler will fight that same battle as she gets older. But I worry that if she does, my own sad monster will devour me, as I often feel like it inevitably will, before I get a chance to help Schuyler cope with hers. I hope she learns how to do that better than I ever did.
As she grows older, I like to think that Schuyler's relationship with me becomes easier to comprehend, although that's not a given. It's certainly stronger now than it's ever been, which to the parent of a teenager is a very welcome surprise. And yet, it is still very much true that our best moments come in wordless appreciate of each other. We curl up together on the couch and watch terrible monster movies, or play games together on her iPad, or wait outside in the morning air for her bus. Quiet moments sometimes, rowdy at others, but always with an indescribable ease, and the sense that we'll always have each other, no matter what comes our way. This is a great comfort to us both, even if it's fiction. Which it probably is.
She calls me Daddy-O. I call her any number of nicknames. Schuyler Bear. Spacemonkey. Chickenhead Jones. We call each other "Big Dummy" in public places, attractive disapproving looks. Which is fine; that's probably why we do it. We step on the heels of each others' shoes when we walk through stores. We are incapable of walking past toy lightsabers without slicing each others' heads off. We share waffle fries, but she always gets the end pieces, which we call "potato butts". When I ask her if she wants to eat a butt, she always says yes. Burps are always appreciated for their merit. Farts are always funny.
The more I learn about self-advocacy for people with disabilities, the more I feel like I learn from Schuyler's interactions. She does so much communicating, so much of it in ways beyond traditional verbal expression. Talking with Schuyler means taking in so much that is spun out of her wild gestures and her expressions and the tattered remnants of her sign language. Schuyler can be easy to follow sometimes, and yet get her on the phone and she becomes almost impossible to understand, even for those of us who live with her. Schuyler's language is an amalgam of all the ways we all try to make ourselves understood, but it works in a way that is entirely her own. Understanding Schuyler means paying very close attention to her. And that close attention is rewarded, not just in communication but in a kind of intimacy, a closeness that she delights in.
I'm overprotective of Schuyler, even when I try not to be, when I know that she'll be better for taking flight on her own. I let people into her life very sparingly. Sometimes I regret it wildly; most times, she grows from the friendships she makes and I guess I do, too. I watch Schuyler try to navigate her own friendships with kids her own age, and I wish I could make it easier for her, but of course I can't.
There are times that I see something else in Schuyler, something familiar. I watch dark shadows cross her eyes, and I see her frustrations rise at simple obstacles. I observe her need for solitary time, not playing or reading but simply watching videos on her iPad or just sitting. I recognize some of it. I know that we all have our own little monsters, and I fear that polymicrogyria isn't the only one I've given to her. I was probably Schuyler's age when I became aware of my own sadness, the kind that arrives on silent feet and turns the room upside down. I've never done a very good job of managing it, although I've started getting help with it. We're making sure that Schuyler gets help, too. I'm not sure if I'm entirely past my skepticism of that help, but for her, it's a given. She's got a lot that she needs help with. That's not one that she needs to face alone.
We talked about it yesterdayday, when she noted that I seemed a little sad. I explained how for some people, sadness just kind of happens, and it's a thing that we deal with as best as we can. It's just something that happens inside our brains.
"Like my little monster?" she asked. When I said yes, she said "You have a little monster, too!" She was extremely pleased at this, for reasons that both defy explanation and yet make perfect sense.
I don't know if Schuyler will fight that same battle as she gets older. But I worry that if she does, my own sad monster will devour me, as I often feel like it inevitably will, before I get a chance to help Schuyler cope with hers. I hope she learns how to do that better than I ever did.
April 26, 2013
A Question of Trust
I have trust issues. I know this. I'm working on that.
Recently I posted a piece for Parenting.com ("The Negotiating Season") describing my perception of the IEP process. I didn't intend to present it as anything other than my own perspective, but looking back on it now, I guess I did kind of voice it in terms of a near-universal experience. I'm not terribly apologetic about that; my own conversations with countless parents has led me to the pretty solid conclusion that if anything, we've got it better than almost every other special needs family in the world. So, you know, yay for us, but boo to the bigger picture.
It wasn't long before a special educator chimed in ("Negotiating Season? Not quite.") to offer her thoughts. It wasn't rudely done at all, I'm pleased to say. She certainly does have a different perspective, and this is an important dialogue. I'm glad she wrote it.
If I have any quibble with her post, it would probably be the same one that I identified in my own essay. She presents her own experience as something of a universal one. She responded in particular to my point about the inherent conflict between the parent/family position and that of the school:
I think that sounds wonderful. I also think it sounds like a rare thing. Like, unicorn-level rare.
Look, I've met a great many dedicated parent advocates over the years, and I've met a lot of fantastic therapists as well. And I've met and spoken with and worked with many very good special educators. The head of Schuyler's current team is one of the best yet. She listens, really listens, and she's willing to try things that are out of her comfort zone. If she were the person calling the shots for Schuyler, we'd really be accomplishing something.
But there's a hard reality at play. As we've been learning (or relearning, really) lately, the decision-making process is often in the hands of people who make those decisions based on some very dubious criteria. Not just money, either. Things like territorialism, personal bias, and a condescending disregard for dumb old parents in the process. If I ever allowed myself to believe that the kinds of short-sighted decisions that I chronicled in my book were a thing of the past, I'd be setting Schuyler up for an ambush. And I've been guilty of not taking up the fight with enough energy, particularly in the past few years. We're all paying for my failure now.
Here's an example, and I apologize in advance, because it is both long and detailed. This week, in preparation for Schuyler's IEP, I requested that an outside consultant be brought in to speak to the district's team about issues both AAC-focused and big picture. The response I received almost immediately from the district's assistive technology leader was disheartening.
Our request wasn't even considered. It didn't even make it to the IEP meeting. It was dismissed out of hand. The members of Schuyler's team have already received all the training they need, I was informed. And if dumb dad needed more training on how to use Schuyler's AAC (the same system she's been using since 2005), the AT leader would be happy to provide that instruction herself. There's no need for anyone from the outside, because what could this experienced team possibly learn from someone outside the district?
But the thing is, this district's assistive technology team has been failing Schuyler in various ways both large and small since she came to middle school. It's taken a while for that to become apparent since the special education team at Schuyler's school has been so good at helping Schuyler, but the fact remains that in two years, the focus of Schuyler's communication has shifted away from her AAC. Without the support of the AT team, and without an eye to a future in which she will require a more nuanced and comprehensive way to communicate expressively, she's been allowed to get by on her verbal communication, making herself understood in context and losing much of her proficiency on her device.
How does this happen to a kid like Schuyler, someone who has been, almost literally, a poster child for assistive tech? The answer might just partially lie in the fact that over the past two years, the only contact I've had with her assistive tech team leader has been that condescending, "there there, dad" email I received earlier this week. Until I floated the possibility of having someone with a fresh set of eyes and a new perspective on communication come in to speak to Schuyler's team, the district's AT team was perfectly okay with seeing Schuyler a few times a year and not even formulating any kind of plan for addressing her growing awareness of her difference and her subsequent reluctance to use conspicuous speech technology. They didn't even come up with the plan to switch her to the iPad, and until she began showing success with it, they were actually on record as not officially supporting it.
The point of this long-winded rant is simply this. We are in one of the top school districts in the country, and this kind of thing still happens here. This district has money, and has experience, and a sincere desire to do the right thing. And yet after all this time, here we are, trying to get professionals who have worked with Schuyler since kindergarten to listen, to pay attention to what we want and what we believe Schuyler needs. Bruised egos and stepped-on toes still drive policy from time to time, here in this best of all possible worlds.
Most parents have it worse. Most IEP meetings are charged with anxiety because team members don't understand each others' perspectives. Parents don't feel heard, and teachers don't feel respected. But the fact remains that unless a parent has the resources to bring lawyers, guns and money, they are usually in a position of disadvantage.
So yeah. We'd love it if we didn't feel the need to prepare for a fight before the IEP meeting. We'd also like a pony.
Ultimately, even in a competent district like ours, I don't think my point about the different things we bring to the table is all that problematic. It's a simple statement of the reality of allocating limited resources. We're like dinosaurs, in a way. You've got your meat eaters and you've got your plant eaters, and they're all part of the ecosystem. It's probably not much fun to always be searching for food and killing the crap out of everything; that sounds like a lot of work with not a lot of down time. And it definitely sucks to be constantly on alert, just waiting for some carnivore to jump up and bite your face. But everyone's got their part to play.
Special needs parents are probably herbivores. But we do have T-rex dreams.
Recently I posted a piece for Parenting.com ("The Negotiating Season") describing my perception of the IEP process. I didn't intend to present it as anything other than my own perspective, but looking back on it now, I guess I did kind of voice it in terms of a near-universal experience. I'm not terribly apologetic about that; my own conversations with countless parents has led me to the pretty solid conclusion that if anything, we've got it better than almost every other special needs family in the world. So, you know, yay for us, but boo to the bigger picture.
It wasn't long before a special educator chimed in ("Negotiating Season? Not quite.") to offer her thoughts. It wasn't rudely done at all, I'm pleased to say. She certainly does have a different perspective, and this is an important dialogue. I'm glad she wrote it.
If I have any quibble with her post, it would probably be the same one that I identified in my own essay. She presents her own experience as something of a universal one. She responded in particular to my point about the inherent conflict between the parent/family position and that of the school:
Me:
As parents, we advocate for our kids receiving as much in the way of services as we can get, and we do so knowing that our success could very well mean fewer resources for other students. That sounds harsh, but we shouldn't worry too much about that, because the school's position is the opposite. Giving each student as little as they can in the way of individual resources means more for everyone. It's an awkward dance that shouldn't be about money and resources but absolutely is.
Um, no. We do not sit at the table thinking, "let's give each student as little as we can because that means more resources for everyone." We sit there and think about what will be best for each individual student. As teachers we are passionate about your child- we want your child to succeed and we want your child to make unbelievable gains. We also know that some things that look like they will be beneficial actually can be a determinate to your child's learning. Some services look great but will hinder your child's ability to scaffold his/her learning, transfer skills and be independent. And then there is the legal aspect that we are, in fact, held to. Schools are required to provide what is considered a "free and appropriate public education" (FAPE). Sadly appropriate doesn't always transfer to your child achieving their full potential. This "appropriate" piece stumps us too. It's not us, it's the law and the courts and how the word appropriate is determined. But many of us, if we think there is a way, will fight for you.
I think that sounds wonderful. I also think it sounds like a rare thing. Like, unicorn-level rare.
Look, I've met a great many dedicated parent advocates over the years, and I've met a lot of fantastic therapists as well. And I've met and spoken with and worked with many very good special educators. The head of Schuyler's current team is one of the best yet. She listens, really listens, and she's willing to try things that are out of her comfort zone. If she were the person calling the shots for Schuyler, we'd really be accomplishing something.
But there's a hard reality at play. As we've been learning (or relearning, really) lately, the decision-making process is often in the hands of people who make those decisions based on some very dubious criteria. Not just money, either. Things like territorialism, personal bias, and a condescending disregard for dumb old parents in the process. If I ever allowed myself to believe that the kinds of short-sighted decisions that I chronicled in my book were a thing of the past, I'd be setting Schuyler up for an ambush. And I've been guilty of not taking up the fight with enough energy, particularly in the past few years. We're all paying for my failure now.
Here's an example, and I apologize in advance, because it is both long and detailed. This week, in preparation for Schuyler's IEP, I requested that an outside consultant be brought in to speak to the district's team about issues both AAC-focused and big picture. The response I received almost immediately from the district's assistive technology leader was disheartening.
Our request wasn't even considered. It didn't even make it to the IEP meeting. It was dismissed out of hand. The members of Schuyler's team have already received all the training they need, I was informed. And if dumb dad needed more training on how to use Schuyler's AAC (the same system she's been using since 2005), the AT leader would be happy to provide that instruction herself. There's no need for anyone from the outside, because what could this experienced team possibly learn from someone outside the district?
But the thing is, this district's assistive technology team has been failing Schuyler in various ways both large and small since she came to middle school. It's taken a while for that to become apparent since the special education team at Schuyler's school has been so good at helping Schuyler, but the fact remains that in two years, the focus of Schuyler's communication has shifted away from her AAC. Without the support of the AT team, and without an eye to a future in which she will require a more nuanced and comprehensive way to communicate expressively, she's been allowed to get by on her verbal communication, making herself understood in context and losing much of her proficiency on her device.
How does this happen to a kid like Schuyler, someone who has been, almost literally, a poster child for assistive tech? The answer might just partially lie in the fact that over the past two years, the only contact I've had with her assistive tech team leader has been that condescending, "there there, dad" email I received earlier this week. Until I floated the possibility of having someone with a fresh set of eyes and a new perspective on communication come in to speak to Schuyler's team, the district's AT team was perfectly okay with seeing Schuyler a few times a year and not even formulating any kind of plan for addressing her growing awareness of her difference and her subsequent reluctance to use conspicuous speech technology. They didn't even come up with the plan to switch her to the iPad, and until she began showing success with it, they were actually on record as not officially supporting it.
The point of this long-winded rant is simply this. We are in one of the top school districts in the country, and this kind of thing still happens here. This district has money, and has experience, and a sincere desire to do the right thing. And yet after all this time, here we are, trying to get professionals who have worked with Schuyler since kindergarten to listen, to pay attention to what we want and what we believe Schuyler needs. Bruised egos and stepped-on toes still drive policy from time to time, here in this best of all possible worlds.
Most parents have it worse. Most IEP meetings are charged with anxiety because team members don't understand each others' perspectives. Parents don't feel heard, and teachers don't feel respected. But the fact remains that unless a parent has the resources to bring lawyers, guns and money, they are usually in a position of disadvantage.
So yeah. We'd love it if we didn't feel the need to prepare for a fight before the IEP meeting. We'd also like a pony.
Ultimately, even in a competent district like ours, I don't think my point about the different things we bring to the table is all that problematic. It's a simple statement of the reality of allocating limited resources. We're like dinosaurs, in a way. You've got your meat eaters and you've got your plant eaters, and they're all part of the ecosystem. It's probably not much fun to always be searching for food and killing the crap out of everything; that sounds like a lot of work with not a lot of down time. And it definitely sucks to be constantly on alert, just waiting for some carnivore to jump up and bite your face. But everyone's got their part to play.
Special needs parents are probably herbivores. But we do have T-rex dreams.
April 16, 2013
After Wooster, Part Two: On Being Human
In a larger sense, I guess perhaps it really is all about tools. In a sense, all the work that everyone associated with disability does becomes a tool. A tool, and a means to an end, that end being a sea change in how our society recognizes basic humanity. That end often feels too big, too much, too far away. It can be a disheartening feeling.
This was mostly the subject of my speech at Wooster. I didn't want to talk so much about specifics of Schuyler's experience with AAC, or what I'd learned as a parent, or to make myself sound like a swell dad or a fancy writer, or to make us all feel good about what we were doing. Schuyler's story is the story of every kid who ever needed help communicating to a larger world, and of every adult those kids become. Most of those in attendance knew Schuyler's story, whether or not they realized it. And I'm just a guy who wrote a book and was granted a platform in the world because I got lucky. I remain lucky, just a dumb dad who knows how to push words around in a way that people will listen to. What matters is what I do with it, I suppose.
I wanted people listening to my speech to understand that Schuyler's disability makes her life more challenging, but her difficulty mostly comes from trying to move through a world that hasn't made a place for her, or for those afflicted as she is, and certainly for those whose own communication is challenging in ways that go far beyond anything Schuyler has ever faced. I wanted people to think about communication, which I feel is the touchstone here, the piece that drives the rest. I wanted people to understand that communication requires that vast toolbox, full of possibilities that often don't even look like tools to our limited vision.
I wanted those who were listening to what I had to say to think about worth. I wanted them to think about what it means to be a human being, and whether or not love can truly exist where value hasn't been recognized and allowed to flourish.
I think the fight for equal rights (and a true shift in how we as a society value the disabled among us) must be expressed in the language of basic human rights. It can't be about entitlements, or how much is appropriate to do for kids with disabilities in school or the adults they become. It absolutely can't be about what we think we can afford.
It must be about what we CAN'T afford, and who we cannot allow ourselves to neglect if we want our humanity to thrive and not wither. It's not just about how we treat the afflicted among us. It's about what we are prepared to demand from ourselves. It's about what we wish to see when we look inward.
What I wanted to accomplish in my speech was big and difficult, and I'm small and flawed. But if I could reach anyone who heard what I was trying to say and recognized their own feelings that things can't remain like this, then it was a start. I would settle for reaching one person, if that person was committed to doing the hard work, the good work. And I believe I may have succeeded, which excites me and makes me hungry for more. Hungry for change, and for a transformation in what we as a society can recognize, within a breathtaking diversity of difference, as human and of real worth.
In my speech, I discussed Jean Vanier's belief that those with disabilities compel us to face two very difficult questions. "Do you consider me human? Do you love me?" In our journey to answer those questions, we reach a point of not just acceptance with those with disabilities but of real integration into the social narrative in a series of evolutionary steps. The first is fear, of the differences and of our own frailty. Next comes pity, which is only slightly better and certainly no more helpful. Most of us move on to a place where we respect persons with disabilities, and some of us move forward to a sincere desire to do the work required to help them.
But there's a final step that we as a society must make. The path to understanding the true humanity of the disabled is to enter into authentic relationships with them, and to reach a state of love through an unfettered grasp of their humanity in all its difference. That piece can be elusive, even to professionals. I'm truly grateful to programs like Best Buddies or the HOPE program at Schuyler's school that partners neurotypical kids with their special needs peers during lunch periods and school activities, but that's not the finish line. There is no finish line, but rather an evolution for us, one that leads to real relationships. Intimate friends, romantic partners, professional colleagues, bitter enemies, whatever. But connections that are real, and which aren't simply real in spite of the disabilities and the differences, but immersed in them. Human neurological and physical diversity as a driving engine of connection.
I quoted Vanier in my speech, but I could have quoted Paddy Chayefsky (through the voice of his character Howard Beale in the movie Network). "All I know is that first you've got to get mad. You've got to say, 'I'm a human being, God damn it! My life has value!'"
Either one works for me.
This was mostly the subject of my speech at Wooster. I didn't want to talk so much about specifics of Schuyler's experience with AAC, or what I'd learned as a parent, or to make myself sound like a swell dad or a fancy writer, or to make us all feel good about what we were doing. Schuyler's story is the story of every kid who ever needed help communicating to a larger world, and of every adult those kids become. Most of those in attendance knew Schuyler's story, whether or not they realized it. And I'm just a guy who wrote a book and was granted a platform in the world because I got lucky. I remain lucky, just a dumb dad who knows how to push words around in a way that people will listen to. What matters is what I do with it, I suppose.
I wanted people listening to my speech to understand that Schuyler's disability makes her life more challenging, but her difficulty mostly comes from trying to move through a world that hasn't made a place for her, or for those afflicted as she is, and certainly for those whose own communication is challenging in ways that go far beyond anything Schuyler has ever faced. I wanted people to think about communication, which I feel is the touchstone here, the piece that drives the rest. I wanted people to understand that communication requires that vast toolbox, full of possibilities that often don't even look like tools to our limited vision.
I wanted those who were listening to what I had to say to think about worth. I wanted them to think about what it means to be a human being, and whether or not love can truly exist where value hasn't been recognized and allowed to flourish.
I think the fight for equal rights (and a true shift in how we as a society value the disabled among us) must be expressed in the language of basic human rights. It can't be about entitlements, or how much is appropriate to do for kids with disabilities in school or the adults they become. It absolutely can't be about what we think we can afford.
It must be about what we CAN'T afford, and who we cannot allow ourselves to neglect if we want our humanity to thrive and not wither. It's not just about how we treat the afflicted among us. It's about what we are prepared to demand from ourselves. It's about what we wish to see when we look inward.
What I wanted to accomplish in my speech was big and difficult, and I'm small and flawed. But if I could reach anyone who heard what I was trying to say and recognized their own feelings that things can't remain like this, then it was a start. I would settle for reaching one person, if that person was committed to doing the hard work, the good work. And I believe I may have succeeded, which excites me and makes me hungry for more. Hungry for change, and for a transformation in what we as a society can recognize, within a breathtaking diversity of difference, as human and of real worth.
In my speech, I discussed Jean Vanier's belief that those with disabilities compel us to face two very difficult questions. "Do you consider me human? Do you love me?" In our journey to answer those questions, we reach a point of not just acceptance with those with disabilities but of real integration into the social narrative in a series of evolutionary steps. The first is fear, of the differences and of our own frailty. Next comes pity, which is only slightly better and certainly no more helpful. Most of us move on to a place where we respect persons with disabilities, and some of us move forward to a sincere desire to do the work required to help them.
But there's a final step that we as a society must make. The path to understanding the true humanity of the disabled is to enter into authentic relationships with them, and to reach a state of love through an unfettered grasp of their humanity in all its difference. That piece can be elusive, even to professionals. I'm truly grateful to programs like Best Buddies or the HOPE program at Schuyler's school that partners neurotypical kids with their special needs peers during lunch periods and school activities, but that's not the finish line. There is no finish line, but rather an evolution for us, one that leads to real relationships. Intimate friends, romantic partners, professional colleagues, bitter enemies, whatever. But connections that are real, and which aren't simply real in spite of the disabilities and the differences, but immersed in them. Human neurological and physical diversity as a driving engine of connection.
I quoted Vanier in my speech, but I could have quoted Paddy Chayefsky (through the voice of his character Howard Beale in the movie Network). "All I know is that first you've got to get mad. You've got to say, 'I'm a human being, God damn it! My life has value!'"
Either one works for me.
April 2, 2013
Brick Wall Awareness Month
Today at Support for Special Needs:
Despite accommodations, our kids don't generally do well at all on these tests, and they find themselves deeply demoralized by the results. It's an area in which they cannot help but feel a direct comparison between their own abilities and those of their neurotypical classmates. In subjecting our kids to these tests, we add to the already daunting obstacles they climb every day, obstacles we can barely even comprehend. We don't generally learn much of anything about students with disabilities who take these tests. We learn plenty about the system, but nothing helpful. Nothing we didn't already know.
March 28, 2013
Three Cheers for Inclusiveness
Today, over at the 504:
It's easy to make fun of the A for effort, the trophy for participation, but the fact is, for Schuyler and countless kids just like her, those trophies are the ones that sit on their shelves. And they're not cheap tokens of faint praise, either. It's impossible to overestimate the hard work and perseverance those trophies represent to kids for whom participation alone is a triumph. That very real accomplishment is made possible by programs like the Special Olympics, or the Miracle League in which Schuyler plays soccer and baseball with other disabled kids, or the inclusive cheerleading squad at her middle school. Schuyler and her friends try so hard to fit into the world. In programs like these, they succeed.
February 25, 2013
Autonomy is a Kind of Monster, Too
Today, at Support for Special Needs:
"Schuyler's differences are significant. Her life will be similarly different, and I anticipate it will require her to do so from our home, at least initially. Until she finds her own Island of Misfit Toys, she will always have a home with us. Her chinchillas will be here, so I suspect she'll be okay with that for a while."
February 18, 2013
Alone on a Crowded Sea
Today, at Support for Special Needs:
"I once believed that a larger sense of community would benefit us all, that the rising tide raises all the boats, etc. I don't think I believe that anymore, not entirely. The Internet makes it feel like there are a lot of us in the same boat, but perhaps it's more like there are a great many little boats bobbing around in the same dark sea. And perhaps that's the best we can hope for. Tend your little boat, and find the friends with who you can tie onto for a time and help each other."
January 14, 2013
Sandcastles
Today on Support for Special Needs, I discuss the societal battles that those of us in the disability community fight over and over, even the ones we know we'll never win, as if we're building and rebuilding sandcastles that we know will be destroyed by the tide every night.
I'm not going to lie. It gets old.
I'm not going to lie. It gets old.
December 21, 2012
"Such a light such dark did span..."
The other day, for a post honoring the victims of the Newtown shooting, I quoted some lines by an anonymous poet, one that I knew from a magnificent piece of Christmas music, Hodie by Ralph Vaughan Williams. The poem comes from a heartachingly beautiful chorus near the end, and when I went back and listened to it, I realized that I kind of wanted to quote the second verse, too.
I've written about how the holidays can be complicated for an agnostic family living in an overwhelmingly Christian society; I feel I write about it every year, actually. Not just for the obvious reasons, but also for the pangs of envy that come from watching others receive comfort and warmth from something that has meaning to them. I don't imagine the Rummel-Hudsons will ever become Christians, and certainly not just so we'll have a nicer time at Christmas. The challenge for us comes from searching for meaning in the world that we DO believe in, a world based not on the divinity of Christ and the community of believers, but on other things, smaller things, perhaps. Sometimes as small as a child.
Even for a non-Christian, there is still something powerful about the image of a newborn child during the holidays. It sounds treacly, bordering on cliché, but children really are promise, and in believing in the promise of a child, we find ourselves renewed. For me, from the shabby, sometimes wrecked perspective of middle age, that sense of renewal becomes especially important. When I went back and listened to the music that inspired that quote, I found myself catching my breath at the line declaring that this promise and this joy would break the chains of evil from mankind. The text is referencing the birth of a particular child, of course. And yet, it's important to remember, always remember, that no matter how happy and bright and shining our Christmas celebrations may aspire to be, there's always the end of that story to look forward to. In every Christmas, there is some Easter waiting.
In our simple joy, there is bittersweet sacrifice waiting.
This season feels different from holidays past. It seems harder somehow. In a larger sense, there's no mystery why, and I suspect that there are a great many homes feeling this. Newtown has darkened the holidays in a way that's not easily shaken off. It's too big; no amount of merry thoughts can dispel the mental images we've been trying to push out of our heads, or the heartbreak we've felt, over and over, unrelenting, as we meet the families and learn more about those who have been lost to us. How do we break those chains?
Even so, in the months before Newtown, the world had felt grey to me. The internet had seemed meaner, the real world conversations more terse. And Schuyler was facing the same things on a younger but hardly smaller scale, from girls her age who had already discovered the easy thrill of ostracization. She did so while stubbornly fighting her own unwinnable battle, the one where she believed that if she just tried hard enough, no one would care about her disability or even notice it. Before the world darkened at Newtown, it was already feeling like a stonier place than before.
I wish I had a "But then..." to go to, where I could share something that changed that, made it all better somehow, but I don't. I can only say that I haven't stopped looking for the light. I guess I feel I owe it to her not to miss it if it's there. My agnosticism is nothing like atheism. I haven't closed myself off to the promise latent in this universe to surprise or to elevate.
I don't believe in a holy Christ child, but I do believe in the possibilities of our young ones. I don't believe that Jesus will bring us salvation, but I haven't ruled out the possibility that we might be saved just the same.
No sad thought his soul affright;
Sleep it is that maketh night;
Let no murmur nor rude wind
To his slumbers prove unkind;
But a quire of angels make
His dreams of heaven, and let him wake
To as many joys as can
In this world befall a man.
Promise fills the sky with light,
Stars and angels dance in flight;
Joy of heaven shall now unbind
Chains of evil from mankind,
Love and joy their power shall break,
And for a new born prince’s sake;
Never since the world began
Such a light such dark did span.
I've written about how the holidays can be complicated for an agnostic family living in an overwhelmingly Christian society; I feel I write about it every year, actually. Not just for the obvious reasons, but also for the pangs of envy that come from watching others receive comfort and warmth from something that has meaning to them. I don't imagine the Rummel-Hudsons will ever become Christians, and certainly not just so we'll have a nicer time at Christmas. The challenge for us comes from searching for meaning in the world that we DO believe in, a world based not on the divinity of Christ and the community of believers, but on other things, smaller things, perhaps. Sometimes as small as a child.
Even for a non-Christian, there is still something powerful about the image of a newborn child during the holidays. It sounds treacly, bordering on cliché, but children really are promise, and in believing in the promise of a child, we find ourselves renewed. For me, from the shabby, sometimes wrecked perspective of middle age, that sense of renewal becomes especially important. When I went back and listened to the music that inspired that quote, I found myself catching my breath at the line declaring that this promise and this joy would break the chains of evil from mankind. The text is referencing the birth of a particular child, of course. And yet, it's important to remember, always remember, that no matter how happy and bright and shining our Christmas celebrations may aspire to be, there's always the end of that story to look forward to. In every Christmas, there is some Easter waiting.
In our simple joy, there is bittersweet sacrifice waiting.
This season feels different from holidays past. It seems harder somehow. In a larger sense, there's no mystery why, and I suspect that there are a great many homes feeling this. Newtown has darkened the holidays in a way that's not easily shaken off. It's too big; no amount of merry thoughts can dispel the mental images we've been trying to push out of our heads, or the heartbreak we've felt, over and over, unrelenting, as we meet the families and learn more about those who have been lost to us. How do we break those chains?
Even so, in the months before Newtown, the world had felt grey to me. The internet had seemed meaner, the real world conversations more terse. And Schuyler was facing the same things on a younger but hardly smaller scale, from girls her age who had already discovered the easy thrill of ostracization. She did so while stubbornly fighting her own unwinnable battle, the one where she believed that if she just tried hard enough, no one would care about her disability or even notice it. Before the world darkened at Newtown, it was already feeling like a stonier place than before.
I wish I had a "But then..." to go to, where I could share something that changed that, made it all better somehow, but I don't. I can only say that I haven't stopped looking for the light. I guess I feel I owe it to her not to miss it if it's there. My agnosticism is nothing like atheism. I haven't closed myself off to the promise latent in this universe to surprise or to elevate.
I don't believe in a holy Christ child, but I do believe in the possibilities of our young ones. I don't believe that Jesus will bring us salvation, but I haven't ruled out the possibility that we might be saved just the same.
December 17, 2012
"No sad thought his soul affright…"
Today's post at Support for Special Needs is a simple one, mostly paying honor to those who died in Newtown, Connecticut on Friday. I thought about writing about something else, but ultimately I felt like it wasn't time to move forward just yet. Soon, it will be. Not too soon, I hope.
I also wanted to share some of President Obama's remarks from the memorial service last night. Mostly, I wanted them here, noted, remembered, so that down the road, as the horror dims and we become tempted to accept the unacceptable again, we'll be reminded that for a moment, maybe just a fleeting moment, we knew better.
Excerpt from President Obama’s speech at prayer vigil for Newtown shooting victims
December 16, 2012
Newtown, Connecticut
But we as a nation, we are left with some hard questions. You know, someone once described the joy and anxiety of parenthood as the equivalent of having your heart outside of your body all the time, walking around.
With their very first cry, this most precious, vital part of ourselves, our child, is suddenly exposed to the world, to possible mishap or malice, and every parent knows there’s nothing we will not do to shield our children from harm. And yet we also know that with that child’s very first step and each step after that, they are separating from us, that we won’t -- that we can’t always be there for them.
They will suffer sickness and setbacks and broken hearts and disappointments, and we learn that our most important job is to give them what they need to become self-reliant and capable and resilient, ready to face the world without fear. And we know we can’t do this by ourselves.
It comes as a shock at a certain point where you realize no matter how much you love these kids, you can’t do it by yourself, that this job of keeping our children safe and teaching them well is something we can only do together, with the help of friends and neighbors, the help of a community and the help of a nation.
And in that way we come to realize that we bear responsibility for every child, because we’re counting on everybody else to help look after ours, that we’re all parents, that they are all our children.
This is our first task, caring for our children. It’s our first job. If we don’t get that right, we don’t get anything right. That’s how, as a society, we will be judged.
And by that measure, can we truly say, as a nation, that we’re meeting our obligations?
Can we honestly say that we’re doing enough to keep our children, all of them, safe from harm?
Can we claim, as a nation, that we’re all together there, letting them know they are loved and teaching them to love in return?
Can we say that we’re truly doing enough to give all the children of this country the chance they deserve to live out their lives in happiness and with purpose?
I’ve been reflecting on this the last few days, and if we’re honest with ourselves, the answer’s no. We’re not doing enough. And we will have to change. Since I’ve been president, this is the fourth time we have come together to comfort a grieving community torn apart by mass shootings, fourth time we’ve hugged survivors, the fourth time we’ve consoled the families of victims.
And in between, there have been an endless series of deadly shootings across the country, almost daily reports of victims, many of them children, in small towns and in big cities all across America, victims whose -- much of the time their only fault was being at the wrong place at the wrong time.
We can’t tolerate this anymore. These tragedies must end. And to end them, we must change.
We will be told that the causes of such violence are complex, and that is true. No single law, no set of laws can eliminate evil from the world or prevent every senseless act of violence in our society, but that can’t be an excuse for inaction. Surely we can do better than this.
If there’s even one step we can take to save another child or another parent or another town from the grief that’s visited Tucson and Aurora and Oak Creek and Newtown and communities from Columbine to Blacksburg before that, then surely we have an obligation to try.
In the coming weeks, I’ll use whatever power this office holds to engage my fellow citizens, from law enforcement, to mental health professionals, to parents and educators, in an effort aimed at preventing more tragedies like this, because what choice do we have? We can’t accept events like this as routine.
Are we really prepared to say that we’re powerless in the face of such carnage, that the politics are too hard?
Are we prepared to say that such violence visited on our children year after year after year is somehow the price of our freedom?
You know, all the world’s religions, so many of them represented here today, start with a simple question.
Why are we here? What gives our life meaning? What gives our acts purpose?
We know our time on this Earth is fleeting. We know that we will each have our share of pleasure and pain, that even after we chase after some earthly goal, whether it’s wealth or power or fame or just simple comfort, we will, in some fashion, fall short of what we had hoped. We know that, no matter how good our intentions, we’ll all stumble sometimes in some way.
We’ll make mistakes, we’ll experience hardships and even when we’re trying to do the right thing, we know that much of our time will be spent groping through the darkness, so often unable to discern God’s heavenly plans.
There’s only one thing we can be sure of, and that is the love that we have for our children, for our families, for each other. The warmth of a small child’s embrace, that is true.
The memories we have of them, the joy that they bring, the wonder we see through their eyes, that fierce and boundless love we feel for them, a love that takes us out of ourselves and binds us to something larger, we know that’s what matters.
We know we’re always doing right when we’re taking care of them, when we’re teaching them well, when we’re showing acts of kindness. We don’t go wrong when we do that.
That’s what we can be sure of, and that’s what you, the people of Newtown, have reminded us. That’s how you’ve inspired us. You remind us what matters. And that’s what should drive us forward in everything we do for as long as God sees fit to keep us on this Earth.
I also wanted to share some of President Obama's remarks from the memorial service last night. Mostly, I wanted them here, noted, remembered, so that down the road, as the horror dims and we become tempted to accept the unacceptable again, we'll be reminded that for a moment, maybe just a fleeting moment, we knew better.
Excerpt from President Obama’s speech at prayer vigil for Newtown shooting victims
December 16, 2012
Newtown, Connecticut
But we as a nation, we are left with some hard questions. You know, someone once described the joy and anxiety of parenthood as the equivalent of having your heart outside of your body all the time, walking around.
With their very first cry, this most precious, vital part of ourselves, our child, is suddenly exposed to the world, to possible mishap or malice, and every parent knows there’s nothing we will not do to shield our children from harm. And yet we also know that with that child’s very first step and each step after that, they are separating from us, that we won’t -- that we can’t always be there for them.
They will suffer sickness and setbacks and broken hearts and disappointments, and we learn that our most important job is to give them what they need to become self-reliant and capable and resilient, ready to face the world without fear. And we know we can’t do this by ourselves.
It comes as a shock at a certain point where you realize no matter how much you love these kids, you can’t do it by yourself, that this job of keeping our children safe and teaching them well is something we can only do together, with the help of friends and neighbors, the help of a community and the help of a nation.
And in that way we come to realize that we bear responsibility for every child, because we’re counting on everybody else to help look after ours, that we’re all parents, that they are all our children.
This is our first task, caring for our children. It’s our first job. If we don’t get that right, we don’t get anything right. That’s how, as a society, we will be judged.
And by that measure, can we truly say, as a nation, that we’re meeting our obligations?
Can we honestly say that we’re doing enough to keep our children, all of them, safe from harm?
Can we claim, as a nation, that we’re all together there, letting them know they are loved and teaching them to love in return?
Can we say that we’re truly doing enough to give all the children of this country the chance they deserve to live out their lives in happiness and with purpose?
I’ve been reflecting on this the last few days, and if we’re honest with ourselves, the answer’s no. We’re not doing enough. And we will have to change. Since I’ve been president, this is the fourth time we have come together to comfort a grieving community torn apart by mass shootings, fourth time we’ve hugged survivors, the fourth time we’ve consoled the families of victims.
And in between, there have been an endless series of deadly shootings across the country, almost daily reports of victims, many of them children, in small towns and in big cities all across America, victims whose -- much of the time their only fault was being at the wrong place at the wrong time.
We can’t tolerate this anymore. These tragedies must end. And to end them, we must change.
We will be told that the causes of such violence are complex, and that is true. No single law, no set of laws can eliminate evil from the world or prevent every senseless act of violence in our society, but that can’t be an excuse for inaction. Surely we can do better than this.
If there’s even one step we can take to save another child or another parent or another town from the grief that’s visited Tucson and Aurora and Oak Creek and Newtown and communities from Columbine to Blacksburg before that, then surely we have an obligation to try.
In the coming weeks, I’ll use whatever power this office holds to engage my fellow citizens, from law enforcement, to mental health professionals, to parents and educators, in an effort aimed at preventing more tragedies like this, because what choice do we have? We can’t accept events like this as routine.
Are we really prepared to say that we’re powerless in the face of such carnage, that the politics are too hard?
Are we prepared to say that such violence visited on our children year after year after year is somehow the price of our freedom?
You know, all the world’s religions, so many of them represented here today, start with a simple question.
Why are we here? What gives our life meaning? What gives our acts purpose?
We know our time on this Earth is fleeting. We know that we will each have our share of pleasure and pain, that even after we chase after some earthly goal, whether it’s wealth or power or fame or just simple comfort, we will, in some fashion, fall short of what we had hoped. We know that, no matter how good our intentions, we’ll all stumble sometimes in some way.
We’ll make mistakes, we’ll experience hardships and even when we’re trying to do the right thing, we know that much of our time will be spent groping through the darkness, so often unable to discern God’s heavenly plans.
There’s only one thing we can be sure of, and that is the love that we have for our children, for our families, for each other. The warmth of a small child’s embrace, that is true.
The memories we have of them, the joy that they bring, the wonder we see through their eyes, that fierce and boundless love we feel for them, a love that takes us out of ourselves and binds us to something larger, we know that’s what matters.
We know we’re always doing right when we’re taking care of them, when we’re teaching them well, when we’re showing acts of kindness. We don’t go wrong when we do that.
That’s what we can be sure of, and that’s what you, the people of Newtown, have reminded us. That’s how you’ve inspired us. You remind us what matters. And that’s what should drive us forward in everything we do for as long as God sees fit to keep us on this Earth.
December 16, 2012
Unnecessary Evil
Okay, it's been a couple of days. Let's talk about guns.
First of all, I've got what borders on a shameful confession to make. My own opposition to gun ownership has become a little fuzzy over the years. I think in large part, that might just be pragmatism. Guns are a reality in this country, to the point that perhaps it is a little foolish to stand on principle in deciding not to have one, even if that means being that last unarmed citizen standing. I do still stand on that principle, primarily because I have a kid in the house, and I've seen that story on the news too many times to believe that I'm the one guy who will somehow keep his kid from shooting herself when no one's around.
But I also get why people feel the need to have a gun. Take my Liberal card away if you must, but I really do.
A few years ago, someone on the highway threw something huge and heavy, perhaps a brick, at my car, hitting it just above the doorframe on the driver's side back seat where Schuyler was sitting. It left a sizable dent; two or three inches lower and it would have gone through the glass and hit Schuyler. I never knew what I did to deserve that. Who knows? Does it matter? All I know is that I felt threatened, truly threatened, and when I got home, I found myself researching handguns online.
I found one that I thought would be perfect, too. It was a small caliber revolver, nothing crazy. I chose a revolver because it was small and less likely to jam, and because its hammer action made it much less likely to misfire if my hands were shaking in a crisis, which I can guarantee they would be. Of all the self-protection options I explored in the previously unexplored world of firearms, it seemed the least likely to end badly.
I didn't buy it. I spoke to a member of my family and was immediately told that no, I needed to get a 9mm semi-automatic weapon, because of the increased lethality and the ability to fire quickly and repeatedly. I needed to pack some real heat. That was what it took to snap me out of my new gun fever. I imagining Schuyler getting hold of this thing, and suddenly my fear of Very Bad People was dwarfed by my fear of the Very Worst Thought Imaginable. I deleted the link to my handgun of choice and I put our big aluminum softball bat next to the front door. And that was that.
But I thought about it. I seriously considered it.
And now, in the wake of the Newtown shooting, I'm left, as we all are, with some serious questions, and some harsh realities. What do we do about this increasingly dangerous world that we, and more importantly our children, find ourselves? And do we as a society need to exercise a right that may or may not be Constitutional to own military-grade weapons that are designed for one purpose only: to kill a great number of people in a very short period of time?
The debate over gun ownership isn't as black and white as the gun lobby would make it seem. If we accept that there are probably three reasonable reasons to own a gun -- home protection, personal safety and for sport/hunting -- then we have to decide where assault weapons and deadly, rapid-fire ammunition fit.
Conventional wisdom says that a shotgun may be the most effective gun for home defense. It's extremely effective at close range (ie. your house), requires no accuracy so you're unlikely to miss your target, and the sound of the gun being cocked is unmistakable and likely to scare off whoever is trying to steal your tv without firing a shot. If you feel that protecting your home requires an assault weapon or something that can fire off multiple rounds quickly, you might want to consider moving.
As I mentioned before, a revolver is the gun most recommended for personal safety. Unless you're living in a video game, it will almost certainly provide you with enough shots to defend yourself against an assailant, and its hammer action makes it less likely that you will accidentally shoot off your own foot, or that your kids will accidentally hurt themselves with it.
If you're a hunter and you need to bring down your target in a hail of rapidly fired lethal rounds designed for military combat, you might be missing the "sportsman" part of the deal. Unless you are targeting bears wearing body armor, you might also be overestimating your prey.
So we come back to the question of the kinds of weapons that are being used in incidents like Newtown. What is their place in our society? What does the Constitution really have to say about them? Do we have a legal right to sell and own semi-automatic weapons and rapid-fire ammunition? Should we?
Today, two days after Newtown, I feel like the answer is becoming more clear. If the reports coming out of Newtown are accurate, the shooter got off over a hundred rounds in a very short period of time. According to a medical examiner, those children were shot multiple times, from three to eleven times EACH, with a weapon described as "the civilian model of a military weapon used by military and police organizations in over 60 nations around the world". (Does that phrase even make sense? The civilian model?) If the information from Newtown turns out to be true, then twenty-six innocent civilians, most of them six and seven year-old children, were killed by multiple wounds inflicted by the same bullets used by troops in Afghanistan.
There's a lot to talk about in the wake of these shootings, and I think an equally important topic is the state of mental health treatment in this country. It's a subject that I very much hope gets discussion, and much needed action. But the fact remains that if the Newtown shooter had come into that school with a shotgun, or a revolver, or a hunting rifle, or for that matter a knife or a hunting bow or a hammer, we would be facing a very different level of horror, and having a very different conversation.
If you're reading this, I grant that you are unlikely to be one of the citizens who feels a right and a need to easily purchase and own these weapons, or ones just like them, or things like high-capacity gun magazines that allow shooters to fire off multiple rounds in quick succession. But if you are, let me ask you. Why? Do you feel the need to be armed and equipped to fight in a military combat situation? Do you like owning the same weapons that you see in your video games? Is it about feeling safe, or feeling cool?
Because nothing's free. Your right to own weapons designed to kill a lot of people very quickly isn't one that has been handed to you by two hundred year-old frontiersmen with muskets. It's one that has been paid for, and dearly. It's a right that has turned our public places into crime scenes that look like war zones. It has turned our teachers into first responders. Your fight for personal freedom has enlisted our children as unwilling warriors. Warriors, and martyrs.
But I have another shameful confession. I think it's probably too late. If you're all about having these weapons remain cheap and easy to get in this country, I don't really think you've got to do anything at all. You've already won. I don't actually think we are going to meaningfully address this problem. We can try, and I hope we do, but those weapons are out there. You can't solve clean air problems by stuffing the black clouds back into factory smokestacks. We can't unfrack the earth. And we can't take away all the military grade weapons that are now in the hands of, well, whomever. We don't really know, do we? We hear a lot from those who loudly proclaim that the Liberals want to take away their guns (and they're kind of right, when they're talking about those specific weapons of mass killing), and we certainly know where they stand on the issue. Cold dead hands, etc.
But then there are the quiet ones. The wounded ones, the angry ones, the lost ones, the forgotten ones. The ones we don't think about or worry about or try to help, not until we see them on CNN. Their unbalanced rage and impulse to hurt or kill isn't something new, nor is it specifically American. But while we can continue to choose not to help them or care about them or even think about them, we might try not to arm them quite so effectively.
But I'm not sure we can now. And I'm not sure we have the will to try.
I'm not here to call anyone to action, not directly. I'm not going to tell you what to say when you write your representatives. I know what I said when I wrote my own, including my new Tea Party-affiliated Senator-elect, but if you have any idea about the state and the county in which I live, you'll know that my messages were very likely dumped directly into a "left wing loony" file. I certainly can't tell you what to say, or what's the most effective way to affect change. I'm a writer, so I write. Whatever it is that you do is what you're going to do, I guess.
But I hope you're thinking about this, and I hope your horror doesn't fade. When enough of us decide that we're going to take the mental health of our citizens seriously, and when we decide that the right to own cool guns is being paid for with our most precious blood, then perhaps something will happen. I have my doubts, and they are extreme, but I'd love to be wrong.
First of all, I've got what borders on a shameful confession to make. My own opposition to gun ownership has become a little fuzzy over the years. I think in large part, that might just be pragmatism. Guns are a reality in this country, to the point that perhaps it is a little foolish to stand on principle in deciding not to have one, even if that means being that last unarmed citizen standing. I do still stand on that principle, primarily because I have a kid in the house, and I've seen that story on the news too many times to believe that I'm the one guy who will somehow keep his kid from shooting herself when no one's around.
But I also get why people feel the need to have a gun. Take my Liberal card away if you must, but I really do.
A few years ago, someone on the highway threw something huge and heavy, perhaps a brick, at my car, hitting it just above the doorframe on the driver's side back seat where Schuyler was sitting. It left a sizable dent; two or three inches lower and it would have gone through the glass and hit Schuyler. I never knew what I did to deserve that. Who knows? Does it matter? All I know is that I felt threatened, truly threatened, and when I got home, I found myself researching handguns online.
I found one that I thought would be perfect, too. It was a small caliber revolver, nothing crazy. I chose a revolver because it was small and less likely to jam, and because its hammer action made it much less likely to misfire if my hands were shaking in a crisis, which I can guarantee they would be. Of all the self-protection options I explored in the previously unexplored world of firearms, it seemed the least likely to end badly.
I didn't buy it. I spoke to a member of my family and was immediately told that no, I needed to get a 9mm semi-automatic weapon, because of the increased lethality and the ability to fire quickly and repeatedly. I needed to pack some real heat. That was what it took to snap me out of my new gun fever. I imagining Schuyler getting hold of this thing, and suddenly my fear of Very Bad People was dwarfed by my fear of the Very Worst Thought Imaginable. I deleted the link to my handgun of choice and I put our big aluminum softball bat next to the front door. And that was that.
But I thought about it. I seriously considered it.
And now, in the wake of the Newtown shooting, I'm left, as we all are, with some serious questions, and some harsh realities. What do we do about this increasingly dangerous world that we, and more importantly our children, find ourselves? And do we as a society need to exercise a right that may or may not be Constitutional to own military-grade weapons that are designed for one purpose only: to kill a great number of people in a very short period of time?
The debate over gun ownership isn't as black and white as the gun lobby would make it seem. If we accept that there are probably three reasonable reasons to own a gun -- home protection, personal safety and for sport/hunting -- then we have to decide where assault weapons and deadly, rapid-fire ammunition fit.
Conventional wisdom says that a shotgun may be the most effective gun for home defense. It's extremely effective at close range (ie. your house), requires no accuracy so you're unlikely to miss your target, and the sound of the gun being cocked is unmistakable and likely to scare off whoever is trying to steal your tv without firing a shot. If you feel that protecting your home requires an assault weapon or something that can fire off multiple rounds quickly, you might want to consider moving.
As I mentioned before, a revolver is the gun most recommended for personal safety. Unless you're living in a video game, it will almost certainly provide you with enough shots to defend yourself against an assailant, and its hammer action makes it less likely that you will accidentally shoot off your own foot, or that your kids will accidentally hurt themselves with it.
If you're a hunter and you need to bring down your target in a hail of rapidly fired lethal rounds designed for military combat, you might be missing the "sportsman" part of the deal. Unless you are targeting bears wearing body armor, you might also be overestimating your prey.
So we come back to the question of the kinds of weapons that are being used in incidents like Newtown. What is their place in our society? What does the Constitution really have to say about them? Do we have a legal right to sell and own semi-automatic weapons and rapid-fire ammunition? Should we?
Today, two days after Newtown, I feel like the answer is becoming more clear. If the reports coming out of Newtown are accurate, the shooter got off over a hundred rounds in a very short period of time. According to a medical examiner, those children were shot multiple times, from three to eleven times EACH, with a weapon described as "the civilian model of a military weapon used by military and police organizations in over 60 nations around the world". (Does that phrase even make sense? The civilian model?) If the information from Newtown turns out to be true, then twenty-six innocent civilians, most of them six and seven year-old children, were killed by multiple wounds inflicted by the same bullets used by troops in Afghanistan.
There's a lot to talk about in the wake of these shootings, and I think an equally important topic is the state of mental health treatment in this country. It's a subject that I very much hope gets discussion, and much needed action. But the fact remains that if the Newtown shooter had come into that school with a shotgun, or a revolver, or a hunting rifle, or for that matter a knife or a hunting bow or a hammer, we would be facing a very different level of horror, and having a very different conversation.
If you're reading this, I grant that you are unlikely to be one of the citizens who feels a right and a need to easily purchase and own these weapons, or ones just like them, or things like high-capacity gun magazines that allow shooters to fire off multiple rounds in quick succession. But if you are, let me ask you. Why? Do you feel the need to be armed and equipped to fight in a military combat situation? Do you like owning the same weapons that you see in your video games? Is it about feeling safe, or feeling cool?
Because nothing's free. Your right to own weapons designed to kill a lot of people very quickly isn't one that has been handed to you by two hundred year-old frontiersmen with muskets. It's one that has been paid for, and dearly. It's a right that has turned our public places into crime scenes that look like war zones. It has turned our teachers into first responders. Your fight for personal freedom has enlisted our children as unwilling warriors. Warriors, and martyrs.
But I have another shameful confession. I think it's probably too late. If you're all about having these weapons remain cheap and easy to get in this country, I don't really think you've got to do anything at all. You've already won. I don't actually think we are going to meaningfully address this problem. We can try, and I hope we do, but those weapons are out there. You can't solve clean air problems by stuffing the black clouds back into factory smokestacks. We can't unfrack the earth. And we can't take away all the military grade weapons that are now in the hands of, well, whomever. We don't really know, do we? We hear a lot from those who loudly proclaim that the Liberals want to take away their guns (and they're kind of right, when they're talking about those specific weapons of mass killing), and we certainly know where they stand on the issue. Cold dead hands, etc.
But then there are the quiet ones. The wounded ones, the angry ones, the lost ones, the forgotten ones. The ones we don't think about or worry about or try to help, not until we see them on CNN. Their unbalanced rage and impulse to hurt or kill isn't something new, nor is it specifically American. But while we can continue to choose not to help them or care about them or even think about them, we might try not to arm them quite so effectively.
But I'm not sure we can now. And I'm not sure we have the will to try.
I'm not here to call anyone to action, not directly. I'm not going to tell you what to say when you write your representatives. I know what I said when I wrote my own, including my new Tea Party-affiliated Senator-elect, but if you have any idea about the state and the county in which I live, you'll know that my messages were very likely dumped directly into a "left wing loony" file. I certainly can't tell you what to say, or what's the most effective way to affect change. I'm a writer, so I write. Whatever it is that you do is what you're going to do, I guess.
But I hope you're thinking about this, and I hope your horror doesn't fade. When enough of us decide that we're going to take the mental health of our citizens seriously, and when we decide that the right to own cool guns is being paid for with our most precious blood, then perhaps something will happen. I have my doubts, and they are extreme, but I'd love to be wrong.
December 14, 2012
Sometimes They Win
"Monsters are real, and ghosts are real too. They live inside us, and sometimes, they win." ― Stephen King
Years from now, looking back on this blog post, will it be enough simply to refer to the events in Newtown, Connecticut for the reader to know what I'm talking about? WIll it become shorthand, like Columbine? Or will we as a society have become so numb to these kinds of events that they become a grey blur in our memories? One more helicopter angle looking down on a deserted school, one more scene with cops walking in and out of a building that could very easily be my own daughter's school, except for the police tape.
If you're reading this in the future and don't remember what happened today in Newtown, Connecticut, I hope you'll Google it. All those people who died, the teachers and all those children, they deserve to be remembered. They deserve more, they deserve to have their deaths matter, for action to have been spurred to move rusty wheels of change, for a school full of little bodies that still lay where they fell tonight while investigators try to figure out who they are, for all of this to somehow mean something.
If you're reading this in the remote future, did it matter? Did things change?
I can vividly remember after Columbine, the early cries (much of it from the gun lobby) of "It's too soon" and "This isn't the right time to have that discussion." That was so long ago; for perspective, Julie was pregnant with Schuyler but we didn't even know it yet. It was before the Y2K scare, before the contentious Bush/Gore election when we lost faith in our political system, and before 9/11 when we lost our faith in humanity. April of 1999 feels like another world, another lifetime ago, but Columbine? That feels immediate. It feels like it was just yesterday.
Or just this morning.
It feels immediate because some things have changed very little in this country. We as a society keep putting this discussion off for another day. Talking about this right now feels horrific. I get that. I really do. So we wait until we feel a little better and it doesn't seem quite as daunting or as horrible. All those little kids are buried, and we have our holidays, and then a new season of Dancing With The Stars comes on. We see something shiny and pretty, or something new pisses us off, and we move on.
Columbine took place almost fourteen years ago. FOURTEEN YEARS. And the worst part is, thirteen innocent people killed suddenly doesn't sound so impressive, not after Virginia Tech and Aurora and Gabby Giffords, and not after today. We're becoming harder to shock, and harder to inspire to action. We don't want to feel bad, and we don't want to pile conflict on top of our grief. So we pretend that there are two sides to this issue, and we punt.
Are there two sides? I don't know. I do know that if there are sides, one of them has dead children, perishing in public schools very much like the one my daughter attends. I'm just not sure we can pretend that this is a political issue anymore, or that there's truly an "appropriate" time to have this discussion. I suspect there are a great many families in Connecticut tonight who are wishing that we as a society had figured this out a long time ago.
I didn't bring up the events in Connecticut over our regular Friday lunch with Schuyler, mostly because I'd just found out the extent of the tragedy maybe five minutes before, and no one at her school seemed to have heard anything yet. I didn't want to send her off to class scaring the shit out of everyone like some little doomsaying Cassandra. And I didn't want to wreck her day.
After she got home, Schuyler knew immediately something was up. ("Daddy-O, you're hugging my guts out!") So we talked about it, and I did the best I could. She was scared, "a little", and she had lots of questions. I answered them as best as I could, and I tried to be honest with her.
But when she asked if it was going to happen at her school, I told her no. Not probably not, but simply no, there was no question about it, it will never happen at her school. So I did lie. I professed a certainty that I can never actually back up. And I think maybe she knew that, since we went on to talk about what she should do if something like this DOES ever take place. It's complicated, and I feel like I stumbled a bit without actually fumbling. I suppose just this once, I can stomach the pretty lie, so long as she knows what to do if faced with an unlikely but hideous truth.
After talking about it, we went to see a movie. We'd been talking about going to see The Hobbit for months, and we got wonderfully, perfectly lost in it. The timing couldn't be better. When the two of us got back to the car, I was already looking at my phone, re-entering a world that has such a thing as Newtown, Connecticut's heartbreak in it. Schuyler was still absorbed with the movie. She wanted to talk about trolls and dragons.
"Do you believe monsters are real?" she asked me, with total innocence and entirely in reference to the movie we'd just seen.
I paused, putting my phone down for a moment.
"Yeah," I answered. "I really do."
Well. I didn't know what else to say.
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| HARTFORD COURANT |
If you're reading this in the future and don't remember what happened today in Newtown, Connecticut, I hope you'll Google it. All those people who died, the teachers and all those children, they deserve to be remembered. They deserve more, they deserve to have their deaths matter, for action to have been spurred to move rusty wheels of change, for a school full of little bodies that still lay where they fell tonight while investigators try to figure out who they are, for all of this to somehow mean something.
If you're reading this in the remote future, did it matter? Did things change?
I can vividly remember after Columbine, the early cries (much of it from the gun lobby) of "It's too soon" and "This isn't the right time to have that discussion." That was so long ago; for perspective, Julie was pregnant with Schuyler but we didn't even know it yet. It was before the Y2K scare, before the contentious Bush/Gore election when we lost faith in our political system, and before 9/11 when we lost our faith in humanity. April of 1999 feels like another world, another lifetime ago, but Columbine? That feels immediate. It feels like it was just yesterday.
Or just this morning.
It feels immediate because some things have changed very little in this country. We as a society keep putting this discussion off for another day. Talking about this right now feels horrific. I get that. I really do. So we wait until we feel a little better and it doesn't seem quite as daunting or as horrible. All those little kids are buried, and we have our holidays, and then a new season of Dancing With The Stars comes on. We see something shiny and pretty, or something new pisses us off, and we move on.
Columbine took place almost fourteen years ago. FOURTEEN YEARS. And the worst part is, thirteen innocent people killed suddenly doesn't sound so impressive, not after Virginia Tech and Aurora and Gabby Giffords, and not after today. We're becoming harder to shock, and harder to inspire to action. We don't want to feel bad, and we don't want to pile conflict on top of our grief. So we pretend that there are two sides to this issue, and we punt.
Are there two sides? I don't know. I do know that if there are sides, one of them has dead children, perishing in public schools very much like the one my daughter attends. I'm just not sure we can pretend that this is a political issue anymore, or that there's truly an "appropriate" time to have this discussion. I suspect there are a great many families in Connecticut tonight who are wishing that we as a society had figured this out a long time ago.
I didn't bring up the events in Connecticut over our regular Friday lunch with Schuyler, mostly because I'd just found out the extent of the tragedy maybe five minutes before, and no one at her school seemed to have heard anything yet. I didn't want to send her off to class scaring the shit out of everyone like some little doomsaying Cassandra. And I didn't want to wreck her day.
After she got home, Schuyler knew immediately something was up. ("Daddy-O, you're hugging my guts out!") So we talked about it, and I did the best I could. She was scared, "a little", and she had lots of questions. I answered them as best as I could, and I tried to be honest with her.
But when she asked if it was going to happen at her school, I told her no. Not probably not, but simply no, there was no question about it, it will never happen at her school. So I did lie. I professed a certainty that I can never actually back up. And I think maybe she knew that, since we went on to talk about what she should do if something like this DOES ever take place. It's complicated, and I feel like I stumbled a bit without actually fumbling. I suppose just this once, I can stomach the pretty lie, so long as she knows what to do if faced with an unlikely but hideous truth.
After talking about it, we went to see a movie. We'd been talking about going to see The Hobbit for months, and we got wonderfully, perfectly lost in it. The timing couldn't be better. When the two of us got back to the car, I was already looking at my phone, re-entering a world that has such a thing as Newtown, Connecticut's heartbreak in it. Schuyler was still absorbed with the movie. She wanted to talk about trolls and dragons.
"Do you believe monsters are real?" she asked me, with total innocence and entirely in reference to the movie we'd just seen.
I paused, putting my phone down for a moment.
"Yeah," I answered. "I really do."
Well. I didn't know what else to say.
November 26, 2012
It's Complicated
This morning over at Support for Special Needs, I discuss the complicated nature of my relationship with Schuyler, which is no doubt both completely unlike any other in the world and at the same time identical to any family with a disability. We're all navigating varying degree of happy and sad. It's complicated for us all.
By the way, speaking of complicated, today is my birthday. Actually, it's not all that complicated at all. I'm forty-five. Forty-five human years. That's youthful for a tortoise, or a tree. It's not feeling all that young to me. It beats the alternative, as they say, but still. Forty-five feels like it falls squarely between kind of awful and frankly surprising.
On the other hand, I might get a chinchilla for my birthday, so you know how it goes. "Strikes and gutters, ups and downs," as the Dude says. I abide, too.
By the way, speaking of complicated, today is my birthday. Actually, it's not all that complicated at all. I'm forty-five. Forty-five human years. That's youthful for a tortoise, or a tree. It's not feeling all that young to me. It beats the alternative, as they say, but still. Forty-five feels like it falls squarely between kind of awful and frankly surprising.
On the other hand, I might get a chinchilla for my birthday, so you know how it goes. "Strikes and gutters, ups and downs," as the Dude says. I abide, too.
November 19, 2012
Broken Thanks
This week at Support for Special Needs, I do something so clichéd in the world of bloggery that I'd might as well be posting pictures of my cat (if I had one) or making little graphics with variations on "...said no one ever" or snotty Willy Wonka.
That's right. It's a Thanksgiving, "what I'm thankful for" post. I'm not too sure how much of it is specific to parents or families of disability, other than it feels like we look a little harder for the bright spots, and are more fully and desperately sustained by the ones we find.
I'm not sure if I'll post again this week. You never know with me, do you? If I don't return before Thursday, I'd like to wish all my American readers the very happiest of Thanksgivings. As for the rest of you, have a swell Thursday.
Next Monday is my birthday. Warning: it's kind of a bad one. Here's hoping I make it to then. I'm not counting those chickens before they hatch. They are not in fact spring chickens, after all.
That's right. It's a Thanksgiving, "what I'm thankful for" post. I'm not too sure how much of it is specific to parents or families of disability, other than it feels like we look a little harder for the bright spots, and are more fully and desperately sustained by the ones we find.
I'm not sure if I'll post again this week. You never know with me, do you? If I don't return before Thursday, I'd like to wish all my American readers the very happiest of Thanksgivings. As for the rest of you, have a swell Thursday.
Next Monday is my birthday. Warning: it's kind of a bad one. Here's hoping I make it to then. I'm not counting those chickens before they hatch. They are not in fact spring chickens, after all.
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| Note: This is not a chicken, spring or otherwise. |
October 23, 2012
Just a Word: Election Edition
It's election season in the United States. This is a very special time for the people of this country, an opportunity to come together to soberly and with much reflection choose the fellow citizens in whom we trust to lead our nation into an uncertain future.
It's a time to explore our differences, of course, but also to celebrate the process of peaceful transition, of the theory of democracy made real. In this season, it is possible to experience the essence of American citizenship and the dignity and majesty of our system of government, based as it is on the strength and goodness of community.
In that spirit of civil discourse, I give you the post-debate words of author, pundit and self-proclaimed patriot Ann Coulter.
Having gotten everyone's attention, she later doubled down. (Beautifully, she did so as a way of calling out the president for insensitivity.)
Charming.
Look. I've written about this in the past, about how some people use this word because they are ignorant, and others because it's good for an easy laugh. And I have never ever said that no one has the right to use it. I've never advocated banning a word, even if that was even possible. In a way, I'd almost rather prefer that the people who want to use it actually do so. It's a quick identifier, a kind of vocabulary profiling, a little red flag that tells me a lot about the person before I invest a great deal of time taking them seriously.
Also, as I've made clear before, I have been extremely guilty of using that word in the past. I didn't necessarily get smarter since then, but through my own life experience and through the extraordinary people I've met as a result of advocating for Schuyler, I think I might have become a little wiser. Certainly more sensitive, although like most people, I have a long way to go. Still, I freely acknowledge that when it comes to speaking out against using the "R word", I am very much Nixon going to China.
Where Ann Coulter is concerned, the first thing we must do is take ignorance off the table. As noted in a post on Sprocket Ink, Coulter graduated cum laude from Cornell with a B.A. in history, and received her J.D. from the University of Michigan Law School, where she edited the Michigan Law Review.
When she uses this word to insult the president and liberals, Ann Coulter is making a choice. It's a very calculated choice, too. She knows that people will be upset by her language, but more importantly, she knows exactly WHO will be upset. When contacted about her use of the so-called "R word" in her tweet yesterday, Coulter replied, "The only people who will be offended are too retarded to understand it."
Ann Coulter knows who will be upset, and she knows who will be thrilled. I've worked in a book store; I have a pretty good idea of the people who buy her books. Either way, she's playing to her audience.
And like every other public figure who has used this term loudly and proudly, Ann Coulter has spared not a single thought for those whom she hurts. People like my daughter aren't on her scope. People like my family don't matter. Human beings with developmental disabilities have so very little political power, and fight so hard for what scraps they have. Are they even human beings at all? Don't ask Ann Coulter.
For those with developmental disabilities who can stand up for themselves, and for those of us who care for and love and most of all strive to protect and build a better world for those whom the likes of Ann Coulter would reduce to a vicious punchline, the fight falls at our feet. Not to stop people like Coulter from expressing their opinions. Not to silence them. As I said, if anything, I prefer that they stand in the light when they make these statements. Given the choice of knowing that there are roaches skittering around my kitchen at night (note: I'm being metaphorical; we don't have roaches, knock on wood) or turning on the light, I'll reach for the light every time. Even if some of the roaches, like Coulter, crave that light.
If Liberals excuse her remarks because we think she's a buffoon who is clearly desperate for attention, we become complicit. If Conservatives distance themselves from her and say "Well, she doesn't speak for me, so I have no duty to rebuke her," they are also complicit, because it's not a political issue. It might be a little different if she were abusing communities with any power or any privilege, groups that could push back.
But Coulter knows that the disability community is a safe target. No, scratch that. Not even a target. Just a punchline. A target would imply that there was some political gain to be had in hurting people like my daughter, like her friends and her family and her community.
As it is, there's not even that. They're just retards, right?
Right?
As citizens of the world and children of God, we have a choice to make, and it needs to be every bit as deliberate and considered as Coulter's choice to use that word the way she does. We have a choice to make every time we read a comment like hers made by a public figure, of course. Whether it's a notable Republican like Ann Coulter or a Democrat like Chicago Mayor Rahm Emanuel, we have to hold them accountable.
But more than that, we have a choice to make every time we hear a stranger at the mall use it, or a friend, a family member or a coworker. It is in those moments most of all that we make choices, sometimes hard ones. When we choose silence, when we choose not to make waves or risk looking like humorless scolds, we make a choice. We choose the side of the Ann Coulters of the world.
We choose the dark. When we're silent in opposition, we choose the dark, and we do so knowing perfectly well that we have a flashlight in our pocket, and we choose not to use it.
I remember a line from that famous Howard Beale scene from Network:
I guess what I'm trying to say is yeah, I'm as mad as hell. And I'm not going to take this anymore. And neither should you.
It's a time to explore our differences, of course, but also to celebrate the process of peaceful transition, of the theory of democracy made real. In this season, it is possible to experience the essence of American citizenship and the dignity and majesty of our system of government, based as it is on the strength and goodness of community.
In that spirit of civil discourse, I give you the post-debate words of author, pundit and self-proclaimed patriot Ann Coulter.
I highly approve of Romney's decision to be kind and gentle to the retard.
— Ann Coulter (@AnnCoulter) October 23, 2012
Having gotten everyone's attention, she later doubled down. (Beautifully, she did so as a way of calling out the president for insensitivity.)
Obama: "Stage 3 Romneysia" - because cancer references are HILARIOUS.If he's "the smartest guy in the room" it must be one retarded room.
— Ann Coulter (@AnnCoulter) October 23, 2012
Charming.
Look. I've written about this in the past, about how some people use this word because they are ignorant, and others because it's good for an easy laugh. And I have never ever said that no one has the right to use it. I've never advocated banning a word, even if that was even possible. In a way, I'd almost rather prefer that the people who want to use it actually do so. It's a quick identifier, a kind of vocabulary profiling, a little red flag that tells me a lot about the person before I invest a great deal of time taking them seriously.
Also, as I've made clear before, I have been extremely guilty of using that word in the past. I didn't necessarily get smarter since then, but through my own life experience and through the extraordinary people I've met as a result of advocating for Schuyler, I think I might have become a little wiser. Certainly more sensitive, although like most people, I have a long way to go. Still, I freely acknowledge that when it comes to speaking out against using the "R word", I am very much Nixon going to China.
Where Ann Coulter is concerned, the first thing we must do is take ignorance off the table. As noted in a post on Sprocket Ink, Coulter graduated cum laude from Cornell with a B.A. in history, and received her J.D. from the University of Michigan Law School, where she edited the Michigan Law Review.
When she uses this word to insult the president and liberals, Ann Coulter is making a choice. It's a very calculated choice, too. She knows that people will be upset by her language, but more importantly, she knows exactly WHO will be upset. When contacted about her use of the so-called "R word" in her tweet yesterday, Coulter replied, "The only people who will be offended are too retarded to understand it."
Ann Coulter knows who will be upset, and she knows who will be thrilled. I've worked in a book store; I have a pretty good idea of the people who buy her books. Either way, she's playing to her audience.
And like every other public figure who has used this term loudly and proudly, Ann Coulter has spared not a single thought for those whom she hurts. People like my daughter aren't on her scope. People like my family don't matter. Human beings with developmental disabilities have so very little political power, and fight so hard for what scraps they have. Are they even human beings at all? Don't ask Ann Coulter.
For those with developmental disabilities who can stand up for themselves, and for those of us who care for and love and most of all strive to protect and build a better world for those whom the likes of Ann Coulter would reduce to a vicious punchline, the fight falls at our feet. Not to stop people like Coulter from expressing their opinions. Not to silence them. As I said, if anything, I prefer that they stand in the light when they make these statements. Given the choice of knowing that there are roaches skittering around my kitchen at night (note: I'm being metaphorical; we don't have roaches, knock on wood) or turning on the light, I'll reach for the light every time. Even if some of the roaches, like Coulter, crave that light.
If Liberals excuse her remarks because we think she's a buffoon who is clearly desperate for attention, we become complicit. If Conservatives distance themselves from her and say "Well, she doesn't speak for me, so I have no duty to rebuke her," they are also complicit, because it's not a political issue. It might be a little different if she were abusing communities with any power or any privilege, groups that could push back.
But Coulter knows that the disability community is a safe target. No, scratch that. Not even a target. Just a punchline. A target would imply that there was some political gain to be had in hurting people like my daughter, like her friends and her family and her community.
As it is, there's not even that. They're just retards, right?
Right?
As citizens of the world and children of God, we have a choice to make, and it needs to be every bit as deliberate and considered as Coulter's choice to use that word the way she does. We have a choice to make every time we read a comment like hers made by a public figure, of course. Whether it's a notable Republican like Ann Coulter or a Democrat like Chicago Mayor Rahm Emanuel, we have to hold them accountable.
But more than that, we have a choice to make every time we hear a stranger at the mall use it, or a friend, a family member or a coworker. It is in those moments most of all that we make choices, sometimes hard ones. When we choose silence, when we choose not to make waves or risk looking like humorless scolds, we make a choice. We choose the side of the Ann Coulters of the world.
We choose the dark. When we're silent in opposition, we choose the dark, and we do so knowing perfectly well that we have a flashlight in our pocket, and we choose not to use it.
I remember a line from that famous Howard Beale scene from Network:
"All I know is that first you've got to get mad. You've got to say, 'I'm a human being, God damn it! My life has value!'"
I guess what I'm trying to say is yeah, I'm as mad as hell. And I'm not going to take this anymore. And neither should you.
September 10, 2012
They Walk Among Us!
Today's post at Support for Special Needs continues last week's Bigfoot/Yeti/Nessie theme (well, it was a theme in my head, anyway) as we explore the mythological creature commonly known, when he's known at all, as the Special Needs Dad.
I started off with a point, but really, by the end I was just sort of cracking myself up like an idiot. You might or might not be surprised at just how often that occurs in my life.
August 8, 2012
Just a Word: From the Mouths of our Public Servants Edition
I didn't want to write about this today. I didn't want to write about it at all, actually, but certainly not today. I've got another post coming up tomorrow that I most certainly do not want parked next to this delightful topic. And honestly, I'm tired of talking about it, this thing that doesn't seem to ever change, or ever get better.
But then, I'm not the person who thought it would be funny to use kids like mine as the punchline to a horrible joke, all in service of scoring political points and mocking the President of the United States.
Allegheny, PA County GOP chair Jim Roddey, at the election night party for state Rep. Randy Vulakovich, R-Shaler:
"There was a disappointment tonight. I was very embarrassed. I was in this parking lot and there was a man looking for a space to park, and I found a space for him. And I felt badly -- he looked like he was sort of in distress. And I said, 'Sir, here's a place.' And he said, 'That's a handicapped space.' I said, 'Oh I'm so sorry, I saw that Obama sticker and I thought you were mentally retarded."
Well. There you go.
(I'll no doubt be able to add an update later, with a weaselly statement from Mr. Roddey's spokesperson expressing regret or possibly outrage that his words were taken out of context by the liberal media, and how he does love the little retards of the world so very much. I'll be sure to share it when it comes.)
This isn't about politics; it's just as reprehensible when the sentiment comes out of the mouths of people whose politics align more closely with my own. And this time, it isn't about a slip of the tongue, a casual careless remark, or a moment of poor judgment.
This was a joke. A premeditated joke, one that Jim Roddey planned to make. For all I know, it was written down on a little blue notecard for him. It's even possible that it was written for him, by one of his staff. Jim Roddey stood up, he took the microphone, and he very deliberately and unhesitatingly made a joke, one that I like to think that just about any decent human being would find repulsive.
But that's perhaps the worst part.
From the article: "The crowd hollered and clapped, and then Roddey went into the the usual thanks at political events for grassroots supporters of the winning candidate."
Not one person stood up and called him out on it. Not one person felt compelled to be a voice for basic humanity, for a bare minimal level of human decency. Gathered in a mob, the crowd roared its approval. It cheered and it laughed, and it demonstrated once again that those of us who love and advocate for friends and family with developmental disabilities have a lot of work to do.
And all our work? It might just be for nothing.
I wonder if Jim Roddey and his audience would have laughed if my child had been standing there in front of them. Or Sarah Palin's.
Or yours.
-----
INEVITABLE UPDATE, 8/8: Jim Roddey has apologized for his joke.
"I have a long record of supporting people with disabilities and should have remembered that before I spoke. My remarks were inappropriate and I apologize."See? It's not that he doesn't care about people with developmental disabilities. It's simply that he forgot that he cares. Silly!
Apparently the members of the Allegheny County GOP forgot not to laugh, too.
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| Jim Roddey, Pennsylvania’s Allegheny County GOP Chair and swell guy. info@rcac.net Telephone: 412-458-0068 (Mr. Roddey's phone: 412-512-6747) The Republican Committee of Allegheny County 100 Fleet Street, Suite 205 Pittsburgh, PA 15220 |
July 23, 2012
First
My latest post at Support for Special Needs addresses People First Language. I've written about this before, and I'm not sure my feelings have changed about it very much, but a discussion I had online recently made me think it might be time to revisit the topic. So here you go.
In other news, it is entirely possible that someone in a managerial situation in the city of Chicago might be saying to themselves, "Say, I'd really like to hire that Rob fellow to come work for me in my Factory of Hopes and Dreams, if only I could meet him face to face and determine if I like the cut of his jib."
Well, good news. Both me and my jib will be visiting next week. Let's make it happen.
In other news, it is entirely possible that someone in a managerial situation in the city of Chicago might be saying to themselves, "Say, I'd really like to hire that Rob fellow to come work for me in my Factory of Hopes and Dreams, if only I could meet him face to face and determine if I like the cut of his jib."
Well, good news. Both me and my jib will be visiting next week. Let's make it happen.
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