Showing posts with label well that sucked. Show all posts
Showing posts with label well that sucked. Show all posts

April 29, 2016

The Very, Very Worst

This is Schuyler.

Schuyler is sixteen years old. She plays percussion in her high school band. Schuyler participates in Miracle League soccer and volunteers with Miracle League kids who play baseball, helping out with their practices and their games while wearing a Wonder Woman cap. She takes an art class and writes stories about dragons and monster armies and evil queens. She's a huge Star Wars fan and loves Rey the most, although she's got a soft spot in her heart for Sabine and Ahsoka, too. She vacillates between carefree atheism and curious agnosticism. Schuyler's ambition in life is to help others, particularly people with disabilities, those who have "little monsters like my own", as she puts it. The little monster of her own that she's referring to is the brain malformation called Polymicrogyria, which is the root of most of her struggles and will be for her entire life.

And at this stage of her life, the thing Schuyler wants more than anything in the world is close relationships. With friends, yes, but also more. Schuyler wants to date. She wants to find someone to share her life with, at least the life she's in right now. She can't tell you what that looks like, not even for sure if it's a boy or a girl she's searching for. She only knows that she wants to explore love, and one day soon, as much as it makes me twitchy to say it, she'll want to explore physical relationships as well. Finding that in her life, breaking her loneliness and leaving her too-long lingering childhood behind, these are of paramount importance to her, in ways that can be heartbreaking to watch.

So here's my question to you, reader. Do you think that idea is gross? Do you find it ridiculous to even imagine? Do you find the idea of Schuyler and young people like her with intellectual disabilities having physical and romantic relationships to be something that just cries out to be a punchline, not just of a joke but of a whole comedy routine?

Comedian Gary Owen does.

Apparently BET and Showtime do, too, since they've invested in giving his act, including his disability-related material, a home in their television lineup.

I'm not going to embed his routine in this post; the thought of his face anywhere near my daughter's makes me want to set things on fire. But I will link to the excerpt on YouTube. I encourage you to go watch it, because I want you to understand how much is at stake here, and exactly how bad it can be for people with intellectual disabilities in our popular culture. But if you choose not to go watch it, I'll understand that, too. I watched it halfway through once and then finally got the stomach to see the whole thing earlier today. That's enough for me; I'll never watch it again. It really is the very, very worst.

If you're not inclined to see it for yourself, I'll give you the salient points.

1) Gary Owen tells a story about his cousin, who is, as he says, "retarded". If you miss him sharing this with you, don't worry. He repeats this information, and that word, many times throughout his comedy bit.

2) The story involves what he believes is the unbelievable revelation that his cousin is sexually active. Even more shocking to Mr. Owen is the fact that her partner also has an intellectual disability. This conceit forms the core of his comedy routine. Two people with intellectual disabilities have a sexual relationship. Isn't that disgusting? Isn't it hilarious?

3) To illustrate this point, he impersonates what he imagines his cousin and her partner's behavior might have been like. Not just the courting, but the actual act of sex.

4) If you're imagining this to be the most awful thing you're likely to see someone perform in mainstream pop culture, I'm going to warn you. It's probably even worse than you're imagining.

5) All of this is okay, Mr. Owen assures us, because it's his cousin. That familial relationship gives him license to make her the butt of his comedy routine, to insist that her sex life must be an awkward joke, and to impersonate both her and her partner in the act. Also, and this is very important, he claims to have volunteered for Special Olympics for ten years on her behalf. (He notes his sacrifice in this regard, since, you know, Special Olympians run funny. He had to endure that, you see.) So, you know, he's one of us. He has license.

When he began to get some negative reaction to his material, shockingly so since he sees himself as such a beloved member of the disability family, he responded by posting a link to an interview with comedian Louis CK, in which Louis says, "Saying that something is too terrible to joke about, that's like saying a disease is too terrible to try to cure. That's what you do with awful things, you joke about them. That's how you get through it."

What Gary Owen doesn't appear to understand is this: It's not his thing to get through. He doesn't have an intellectual disability. No one is suggesting that his life and his own sexuality is a disgusting idea worthy of about five minutes of cruel, grotesque jokes and impersonations. Joking about it doesn't help him deal with the pain because there is no pain for him. Only a target. The fact that he may or may not have worked with Special Olympics doesn't make it any better. It makes it exponentially worse. When he suggests, through the Louis CK quote, that intellectual disability is an "awful thing", he should know that in this case, the "awful thing" about their disability is in fact Gary Owen.

I don't know Gary Owen's comedy; like many who are becoming familiar with his body of work because of this particular comedy bit, I knew nothing about him until now. (Nothing like a first impression.) I can't say whether he's funny or smart, except on the evidence of this one routine, which would strongly suggest that he is neither.

But Gary Owen has figured something out that is fairly insightful, and he's using it to earn some cheap but loud laughs. Gary Owen knows that our society doesn't see people with intellectual disabilities as whole human beings, and subsequently many people find the idea of these people having sexual lives to be uncomfortable. Schuyler and her friends can be cute, and they can be inspiring, even. As long as they remain forever children, forever without adult agency, they are allowed a place in our society.

Beyond that, however, people with intellectual disabilities run into trouble. Having awareness of their own adult emotions and bodies, and enjoying the agency to engage in relationships and live sexually active lives, these are the things that human beings do. It's not something that children engage in, and to so many in our society, people with intellectual disabilities are forever children.

In his heart of hearts, I think Gary Owen understands that the targets of his grotesque humor deserve better. He makes excuses and tries to cover his own culpability with his past volunteerism. He knows that what he's doing is terribly, horribly wrong. But the tragedy and the danger of the matter is simply this: Gary Owen may know better, but judging from the howls of laughter in that video clip, his audience doesn't.

In the past, I've written about the use of the word "retarded" in pop culture, but this time, I wish that's all that was going in. If Gary Owen stood up and simply said, "Retards, what are you gonna do, am I right?", I don't think I would do much more than link on Facebook and say, "Hey, look at this asshole." Watching Owen's wretched comedy routine makes me ill, and it makes me angry. It hits so much deeper than other comedians have in the past because he's not just being cruel. He's not just making fun of young adults like Schuyler, calling them less.

Gary Owen is attacking the very idea that someone with an intellectual disability deserves to be a human being at all.

I'm not sure what I should do, and I'm certainly not sure what I think you should do, either. There's a change.org petition to get Showtime to remove this particular segment from his comedy special, which is a start, I guess. I don't think they'll do it; I'm not even sure they can, legally. Remarks he's making on his Facebook page suggest that Gary Owen has zero intention of trying to make any of this better, and his fans seem to be fiercely loyal. I'm not sure there's much to be done in winning hearts and minds.

But I do know this. I need to do something. I need to know that lots of people feel that same impulse. I need to make some noise. I need to shake some trees and kick some walls. I need to howl at the sky and grab people by the shoulders and tell them about this. I need to expend energy in trying to fix this unfixable problem, because my daughter deserves a full, rich, human life experience. She does, her friends do, and the adults they will all become deserve to have their humanity recognized.

Words matter. Media acceptance of what is, in this case, undeniably hate speech, this matters. It matters that executives at BET and Showtime watched that comedy bit and said, "Yeah, that's great stuff. Let's put our brand on that and sell it to our subscribers." It matters a very great deal that many, many people are okay with that choice.

Schuyler and people like her live complicated and difficult lives. People like Gary Owen make those lives much more complicated and much more difficult. If I could say one thing to Mr. Owen and to the people in that audience laughing so hard and to his online fans defending him, it would be this:

Please stop. Please, just fucking stop.




EDITED TO ADD: When I tried to explain the comedy routine to Schuyler (without actually showing it to her, because I'm not a monster), she was obviously pretty pissed off. She asked if she could make a video in response. I said yes. Well, of course I did.

April 25, 2016

Community Standards

This morning at Support for Special Needs:
Excerpt: 
Some of the different hats I wear in my life don't always compliment each other very well. Even though I hate the R Word with the zealotry of a late convert, I'm also a writer, and I don't take the cudgel against language without real hesitation. But as a writer, I have to accept that words have actual power, and when we use them, we have responsibility for the outcome. The concept of hate speech results from the acknowledgement that powerful things sometimes need to be checked. I'd prefer that in this particular case, the checks would be self-applied, and that simply basic humanity would lead you to look at a language containing approximately 1,025,110 words and pick one that didn't cause so much pain to a particularly vulnerable population. I'm not for banned language, as a rule. But I recognize that hate speech occupies a very particular place in our culture, and our response to it is especially important.

March 21, 2016

A Hard, Correct Answer

Today at Support for Special Needs:
Excerpt: 
When we talk about accessibility and inclusion, those aren't just buzzwords. And they're not just about school, either, although that can be hard to remember sometimes. For people like Schuyler, participating in our society can be shut down as soon as they exit the front door. I worry about Schuyler finding employment, but really, there are a lot of steps between here and there for which there aren't any easy answers. Transportation may be the most straightforward, but it's also pretty daunting. It's easy to forget about the simple act of getting from here to there when we're putting together the list of Things To Keep Us Up Late.

November 17, 2015

Real Monsters

Today at Support for Special Needs:
Excerpt: 
Schuyler doesn't understand what's going on in any comprehensive way. I don't know how to explain ISIS or Syria or refugees, and certainly not religious extremism or American jingoism. I tried to explain the Paris tragedy to her as best as I could, but honestly, I'm not sure I understood it all that well myself. I still remember the world before it lost its mind. I don't really have the intelligence or the stomach to make sense of it to Schuyler now.

October 21, 2014

Deflated

Today at Support for Special Needs:
Excerpt: 
Today, I’m tired of the walking. I’m tired of screwing up, and I’m tired of other people treating Schuyler like a cute little pet who might pee on the carpet, rather than a complicated and nuanced human being. My weapon is a rubber sword today, and it feels especially ineffective. I’m just going to sit for a while and see what happens. I wish I had something in my tank, and I’m sure I will tomorrow. But not today. Sorry.

October 20, 2014

Goodbye, Petey

Over the weekend, we said a sudden and unexpected goodbye to Petey, who had been with us since he was a tiny puppy in 2005.

Petey was a shy and sensitive dog (nonverbal, too, ironically) and he and Julie in particular loved each other deeply. If Julie was home, Petey was next to her; I was very much Petey's B Team. But if Julie wasn't around, Petey and I were play buddies, growly wrestlers and shameless dance partners. Petey left a very sad bunch of people and pooches behind him. It hit me last night that I'll never sing my "Petey Bo-Beety, the Petey Pop Pop" song to him again. He left a hole in this family that won't go away any time soon.

Goodbye, Petey. You were the sweetest and most steadfastly loyal dog ever.

May 19, 2014

The Thin Line Between Wrong and Wrong

Today at Support for Special Needs:
But perhaps more importantly, for special needs parents, it's not always as simply the choice between right and wrong. Sometimes, you just have to shoot for the choices that will probably turn out to be wrong, but just perhaps a little less wrong than others. Less damage to undo, fewer apologies, maybe even marginally more restful nights.

May 17, 2014

Borrowed Happy

"So, this is my life. And I want you to know that I am both happy and sad and I'm still trying to figure out how that could be." 
- Stephen Chbosky, The Perks of Being a Wallflower

This is one of those posts I might not actually publish, or that I might think better of and delete after posting it. If you're reading this, you're either Johnny-on-the-Spot, or perhaps I decided not to give the going rate of two shits and left it up. This might be one of those cases where just writing this is cathartic enough to shake me out of my mood and send me on my merry way.

I've been thinking about happiness lately.

(Because of privacy rules, this paragraph is going to be vague. Sorry, I know that's irritating.) I recently embarked on a venture of sorts, one that I thought might lead me down a new path, one that would make me genuinely happy. It ultimately didn't, and I'm taking that failure particularly hard, I won't lie. I feel foolish, and I feel disposable, and if there's a worse way to feel, I'm not sure what it might be. I aspired to something, and my wax wings melted pretty quickly.

The thing is, and I think this is significant, I can't remember the last time I did feel authentic happiness. I know it's been a very long time. If the idea of being truly content with my place in the world is so elusive that I can't even tell you how long it's been, I guess maybe that's an issue. I thought I could see the path until this week. I can't, though.

It's important to note that I'm not some sad mopey bastard with not an ounce of happiness in my life. I think rather the opposite. And when I find my confidence again, as I will shortly, I'll be fine. But it's an undeniable truth that the true satisfaction I find myself feeling is almost always a result of Schuyler's happiness. It comes in things large from time to time, but it's mostly the small joys. A monster movie well-realized. A trip to a comic book store that neither of us expected until we found ourselves standing outside. A joke we've told each other a thousand times. ("Knock knock!" "Come in!")

Schuyler experiences joy, and as a result, I feel some of that reflected warmth as well. I suppose, like a lot of parents (Julie very much included), my own happiness has probably become too caught up in my kid's. I've become dependent on the borrowed happiness I get from her.

If that sounds desperate or sad, I guess perhaps it is. But as I stand here at the end of a shaky week, it might just have to be enough, at least for now.

April 27, 2014

Stumbles

It was a rough week. I won't lie. It was rough for me, and it was even worse for Schuyler. One thing I can say for certain about this week, however, is that if bad days offer the chance for learning, I feel like we all had some graduate level education going on. I feel like we should be wearing those little flat hats and robes and jabbering in Latin.

Most of all, we learned that the structures we come to depend on can be unreliable at best. We were reminded that in the end, we can depend on each other, and sometimes that's all.

There are a lot of very individual stories I could tell about last week, but they wouldn't be of much help to anyone reading. Schuyler and I were both actually threatened, individually and in unrelated circumstances, in ways that left us both a little twitchy. That doesn't actually happen very often, to either of us, which is obviously a good thing, but I'm not sure either of us knew exactly how to respond. We didn't fight back, either of us. For that, I'm proud of her and ashamed of myself.

Without getting into details that are not entirely ours to share, I'll simply say that Schuyler learned how friends can be very unfriendly indeed, and perhaps that her own sense of what true friendship looks like needs some new layers of subtlety that don't come easy to her. I think Schuyler learned that school isn't always a place of fairness, and that sometimes she might find her sense of justice bruised by the "path of least resistance" decisions made by the adults around her. As far as important lessons for adult life go, I suspect that's an important one, but I hate watching her learn it.

I learned some of the same lessons, perhaps. As special needs parents, we become accustomed to the idea that the teachers and administrators and therapists who work with our kids stand on certain principles of behavior. We forget, until we're very dramatically reminded, that those professionals are also human beings. They have insecurities and they have tempers and they have blind spots where they cannot gaze for long with an objective eye. They can do solid work but still stumble.

That doesn't make them bad at what they do. If it did, I would be run out of proverbial town on a proverbial rail. Mine is a most personal kind of writing, and my reactions to the world around me are rarely divorced from my emotional responses. That can be hard for parent advocates, but I also believe it's what gives our work a unique kind of value. Professionals work hard for our kids, but they're also invested deeply in their reputations; parents are invested in not screwing up our kids. Unfortunately, that's probably sometimes at odds with our commitment to being correct in our approach. Our strengths can be our weaknesses; our love can make us stumble, too.

This week, I learned most of all how very human we all are, and how that humanity can be the root of so much failure when it comes to doing our work. Schuyler learned that lesson, too, although for her, I suspect it felt like a lesson in the smallness of those of us who profess to, and occasionally even manage to, work to make her life and the lives of her friends better, richer, more fair, more MORE.

Schuyler ended the week owed more apologies than she received, and as her father, that's hard to bear. I made choices for myself that were about peace rather than justice, but I at least fought similar decisions made in her life. I can at least say that. And thanks to a very dedicated teacher who listened to our concerns and went way beyond what she was required to do in order to address those concerns, and on a Saturday night, no less, we were reminded that there are a great many professionals out there who do this work for the best of reasons, and they do it better than I could ever hope to.

It was not a bad way to end a week that went on far, far too long.

March 10, 2014

Great Expectations

Today at Support for Special Needs:
I’m writing about what I’m feeling here because I think it might be almost as common among special needs parents as that early grieving process. When we buy into a Way That Things Shall Be, it can be hard to let that Way go. Harder than even we realize, because there are so few narratives on which we may depend, and when they disappear, blown away like morning fog, there’s not much in our reserves to take their place. The Way was important, and the Way didn’t work out.

November 22, 2013

Storm Warning

We've embarked down another path with Schuyler. It's not a path we were hoping to ever step foot upon, but then, we were perhaps entertaining unreasonably high hopes.

We received a call from the school yesterday morning, letting us know that Schuyler was in the nurse's office, complaining about a bad headache. When I went to pick her up, the nurse filled in some of the details, including the fact that Schuyler was saying and doing things that didn't actually make a lot of sense. Schuyler seemed tired and a little disoriented when I saw her, and after we got home, she remained... not herself. She complained about a headache for a while, localized on the right side. By three o'clock, she was fine, but even as the afternoon and early evening wore on, she was clearly exhausted. She went to bed early without protest.

So, yeah. Schuyler had a seizure at school. The usual indicators were there, laid out like familiar road signs.

This one seemed worse than before, however, and it manifested itself differently. I made a call to her neurologist, and when he heard the details, he asked that she be brought in immediately. His urgency got our attention.

The short version is that this new manifestation of Schuyler's seizures convinced her doctor that it was time to put Schuyler on seizure medications. Before, he didn't believe that they were serious enough to justify the issues that come with these meds, which are not usually very gentle on the brain. But now, he's concerned that stronger seizures could cause her brain, in its malformed state, to become "kindle" for the harder grand mal seizures that everyone is deeply committed to avoiding if at all possible.

One of the reasons I like this neurologist is that when he talks ABOUT Schuyler, he talks TO Schuyler. He asks her questions directly, only turning to me when she's having trouble expressing herself, and when he's got hard stuff to say, he doesn't sugarcoat it for her. The conversation, some of it dark, about what could happen if her seizures progress, and about what these meds could do to her, was had with Schuyler first and foremost. I like that. She deserves that.

As we talked on the way home, Schuyler suddenly made the connection between the bad and potentially dangerous grand mal seizures we're all trying to ward off and the heartbreaking seizure she witnessed this summer when one of her friends in Miracle League soccer was suddenly stricken in the middle of the field and had to be taken away, still unconscious, in an ambulance. This thought scared the shit out of her, and I don't remember the last time I saw that kind of fear in her eyes, or watched her cry like that. It was hard to watch, but at the same time, she deserved the truth, and the opportunity to take some level of ownership over this thing. She's scared, but she's taking it seriously, in a way that perhaps she hadn't before.

Meds will be good for her. Now that her seizures have reached this level, her brain will benefit from a little control, and will be able to heal and develop without having to fight so much. The risk/benefit balance has shifted, as we always suspected it would.

As we talked it all out in the car on the way home, Schuyler tried to put herself back together. I knew she was looking for answers to questions that she didn't even know how to ask. Big, scary boo questions.

"Look at me, Schuyler," I said. "Everything is going to be okay. I'm not going to let anything bad happen to you. I promise."

Well, I realize I shouldn't have promised her any such thing. Of course I know that. But I've made much bigger mistakes in than making such a promise to her. And I truly meant it in the moment. Hours later, after much contemplation, I still do.

September 16, 2013

The Things We Do Not Say

Today at Support for Special Needs:
For parent advocates, there are rules now, I am told, for the things that we can and cannot say. Break those rules, and we are dehumanizing the very people we profess to love. Say the things we are not supposed to say now, and we are causing harm. Express the things we are told not to say, and we demonstrate that our love for our kids isn't real.

August 21, 2013

The Letter

Today at Support for Special Needs:
If you're a special needs parent, you've probably seen the letter by now. It's been making the rounds for a few days. It was written and delivered anonymously to a family in Newcastle, Ontario, in response to their autistic child's presence in their neighborhood. I'll link to it, sure, but I won't quote it at length. I'll give you a few words from the letter, and you can probably get the drift.

"Nuisance." "Problem." "Noise polluting." "Idiot." "Retarded." "Move away."

"Euthanize."

June 18, 2013

Radioactive

This morning at Support for Special Needs
When I write about the importance of true and authentic relationships with people with disabilities, this is part of that. Humor like this isn't funny unless you can dehumanize your target. There's no question about whether you'll get away with it if you understand that the vast majority of people who might hear you will believe down to their core that a human being with as much worth and value as themselves has been treated unfairly. In a world where that humanity is not just acknowledged but truly and deeply felt, this kind of behavior will be relegated to the fringe of society. It's the kind of thing that should feel toxic, radioactive. It shouldn't take thought in order to recoil from it.

December 14, 2012

Sometimes They Win

"Monsters are real, and ghosts are real too. They live inside us, and sometimes, they win." ― Stephen King

HARTFORD COURANT
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.

December 11, 2012

Hope is the thing with feathers and claws

Schuyler and I had a hard conversation tonight. It was an important one, and I'm not sure I got it wrong, exactly. But it was difficult for certain.

The day began with a parent/teacher conference, with Schuyler's history teacher. She'd shown a big grade point drop on her last report card that concerned us enough to meet with him and talk strategies and such. The meeting went really well, but an interesting and disheartening fact came up during our discussion. In talking about how she uses her iPad in class, he revealed that not only did she never use her AAC apps in class, but he wasn't even aware that they existed.

Schuyler's social anxieties about using assistive technology to communicate are as present as ever. They might just be reaching a critical point, which is so frustrating because she started off so strong and so enthusiastic about using it. Once she got to middle school, she became increasingly self-conscious about using it, and it has been a struggle to get her to do so ever since.

Schuyler doesn't truly believe that others can't understand her verbal speech. Those of us who live with her and love her manage to understand her pretty well, and perhaps it's been a mistake to coast on that comfort level. If her mother and father and godparents and family friends can understand her without her device, then the rest of the world should be able to as well.

But they don't, and as she has used her AAC less and less, her speech has become harder to understand. And the more difficulty the people around her have in understanding her, the more frustrated she gets, until she shuts down. It's a negative cycle that feeds on itself. And it's a cycle that we desperately need to break.

Her history teacher said he would ask her to show him the two apps she alternates between in class, and later I received an email from him. He reported that she seemed happy and excited to show the apps, but also said he wasn't sure if they had sound capabilities. "She wasn't sure, either," he said, which is absolutely untrue. She was pretending not to know, not to understand how these apps work. Apps that she probably comprehends better than I do.

I was frustrated. When she got home from school, I had her immediately sit down and take out her iPad.

"I want to you tell me something on your iPad. I don't care what. Just tell me something."

She typed for a few moments and then had it speak. "Sam Houston is a hero at the San Jacinto."

"That was great," I said. "So why did you act like you don't know how that app works with your teacher?"

Called out, Schuyler made a face that I know all too well. Sadness, mixed with petulance. She hemmed and hawed a little, but I kept pushing her. I could feel that we were both becoming deeply frustrated, but you know how it is when a situation reaches a critical point. Sometimes you're just going to have that conversation.

Finally she said, "I don't want to talk like this." She held up her iPad.

"Schuyler, how else are you going to talk so that people know what you're saying?"

She pointed at her throat angrily. "I want to talk with my voice like everyone else!"

"Well, you can't!"

Silence.

There it was. I just said it.

"I'm sorry, Schuyler. But you just can't. And you know that."

Looking back on it, I don't know if I was blunt or cruel. I felt horrible, even though I don't know if I was actually wrong to say it. Her expression was one of hurt, and for a minute or two I thought she was going to cry. But she didn't. She sat back on the couch with an expression like that of a boxer who just can't fight another round.

"I know, Daddy," she said quietly.

And she does know. She knows better than anyone. But in her extreme innocence that another might call naiveté, Schuyler clings to hope. She doesn't understand genetics or neuroscience. She can't google her condition and grasp what it means to have a congenital condition that will never change, or a brain that will never heal because her monster lives inside its very architecture.

To Schuyler there's always hope that one day, she'll wake up with a clear voice and a strong, unfogged mind, and all of this will be a bad memory. Schuyler will wake up just like all the girls in her classes, girls who are pretty like she is but so alien in their constant chatter and their ever-fluid interactions. Even the kids who are nice to her leave her behind to a certain degree. They don't tease her. Her teachers say that she is mostly beloved by her classmates. But she's tired of being a cherished pet. She doesn't want her difference to be accepted. She wants it to go the fuck away, forever.

Hope is sometimes all we have. Emily Dickinson describes it as the thing with feathers, perched in the soul and singing a wordless tune without fail. That may be true. It may also be the problem. Hope has given Schuyler a perfect dream, but in the absence of that dream's unlikely transformation to reality, she's left with an expectation that will probably never be met, and she's blind to the alternatives. Schuyler can't talk, not well enough to navigate the world, but she has tools at her disposal to find another path. Her hope might just be spoiling her chance to find her way out of the dark, into a light that is very different from the one that shines on the rest of us, but a light nonetheless.

I felt like kind of a horrible father tonight, like I was smothering hope. But I'm not sure that hope didn't have it coming, maybe just a little. In the further conversations we had later, Schuyler talked about her AAC apps and how they were her way to talk as best as she could. She hadn't arrived, and she may very well push it all away again tomorrow. But it's clear that whether or not she's ready to accept some hard truths, she is at the very least processing them.

Schuyler doesn't let go of her hopes very easily, and that is an almost entirely wonderful thing. Against all my instincts and all my own unreasonable hopes and dreams, however, I need her to find her way out of this particular hole that her hope has dug for her.

The last thing we did before Schuyler went to bed tonight was to try on her clothes for her band concert tomorrow evening. Crisp white shirt, pretty black twirly skirt, the works. Tomorrow she'll position herself beside a bass drum, and she'll communicate exactly what she wants to the world. The weird, wonderful little girl with the big drum and the fierce hope.

It's a moment where she won't need words. I only wish there were more of them in her world, and in her future.

October 29, 2012

"I don't know."

In today's post at Support for Special Needs, I discuss Schuyler's frustration with her disability, a frustration for which she has no words, for which she has an incomplete understanding but a visceral need to express nonetheless.

As Schuyler gets older, she finds herself in greater need of the words, and the concepts behind them, to express how very very much she hates her monster, and the unfairness that it brings to her life.

When she was younger, Schuyler said it with a howl. She needs a new howl now, and she's working to find it.


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:

"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.

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.

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

May 21, 2012

Fail

There's a new post at Support for Special Needs. It's not long, but it was hard to write.

I hope I don't have to write another one like this for a long, long time.