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

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.


May 12, 2012

An Undiscovered Country

In the past year or so, Schuyler has made a discovery. It's one I've always known she would make, and always anticipated with a heavy heart. Inevitable, perhaps, for any person with an essentially good heart and a love for the world that it has neither earned nor returned.

Schuyler is learning how to be sad.

She learned in middle school that being surrounded by people doesn't mean you can't be lonely. She learned that people will look at a kid like her and make assumptions that are extremely unkind, assumptions that she can't easily dispel. She learned that her brain can betray her, can leave her confused and dispirited, and that as she grows older, that betrayal only grows worse. The last few times that she's suffered partial complex seizures have left her crying. She had one last night in the middle of dinner with friends that left her sobbing, for no reason she could identify. "I can't stop crying," she kept saying to me, and the confusion in her voice was, for me, perhaps the most heartbreaking of the many bad things about her fucking monster.

Schuyler is coming to realizations about this grand, rough world that she probably already knew, but in the last year or so, she's taken those lessons to heart.

Today I accompanied Schuyler to her middle school band's annual trip to a local water park. I was attending as a parent chaperone, doing things like checking names as the kids got on the bus and handing out wristbands and such, but when the rest of the chaperones' jobs were done and the kids were in the park, my real duty began. The band director, a good and decent person who really does real damage to the crappy reputation of conductors everywhere (I kid, I kid...), recognizes our daughter's challenges, and she works harder than we have any right to expect in order to make Schuyler's band experience a good one. She put me on the chaperone list, I believe, so that I could keep an eye on Schuyler.

Schuyler had a good start to the day as she and a friend gravitated to each other immediately. But I knew we might be in trouble when I saw the girl later with someone else. When Schuyler found me, she was frowning.

"She found another friend," she said. I tried to explain that just because her friend was playing with someone else didn't mean anything bad, and that sometimes people just change up their buddies from time to time, but she wasn't convinced. I honestly had no idea what had happened, but I know Schuyler. She's an amazing person, but she can smother her friends. It's always been a problem and it will continue to be one, until she finds her person, the one who only wants more of her, not less. And that girl or boy will be her soulmate and her forever person, and that will be that.

We sat down for lunch, and were having a pretty good time. Schuyler was fighting a losing battle with a hot dog that she had inadvertently smothered in a toxic strata of mustard, but she was soldiering on. And that's when we heard it, from the table next to ours. A girl, laughing and yelling at her friend.

"You are a retard!"

Schuyler stopped. Her face froze, and she turned to look at the kids. They were oblivious; I don't even think they were from her school. They carried on, not knowing what they had just done, which I suppose is true of the majority of people who casually throw that word around. But I knew. I could see it on Schuyler's face. She turned back to her lunch, her face now a careful mask.

"Are you okay?" I asked. There was no need to acknowledge what had been said.

"I'm not a retard," she said quietly. "That's a mean word."

I tried to explain that the girl wasn't talking about her at all, but Schuyler was absolutely convinced that she was. Beyond that, I explained, not for the first or I suspect the last time, that people who use that word don't have the first clue about who Schuyler is or what she's capable of. That word has nothing to do with her, I said, and people who use it only make themselves smaller, not her. Schuyler sat quietly, not even looking at me when I snapped a photo of her, trying to cheer her up. She listened, but she didn't hear. She'd already heard what she needed to, and not from me, but from one of her peers.

Finally she gave me a lingering hug and said something that I can tell you for a fact that she has never said to me in her young life, yet something that I've said a hundred times to just about any person who has ever loved me, ever. I suppose it was just a matter of time.

"I want to go walk around by myself," she said. "Okay?"

"Okay," I said. And she did, for almost an hour. She was never alone, because I followed her from a distance, watching. Maybe that was the wrong thing to do, but it didn't feel wrong. I know it wasn't the wrong thing to do. Sometimes the hardest part of being a father is when there's absolutely nothing I can do to make it better. Just follow, and let her sadness resonate with my own.

She walked with her hood pulled up, her hands in her pockets, her face cast down, moving sadly through the park and the world like a ghost.

"...her little heart it could explode."

April 14, 2012

Fat Talk

It began, like so many silly things do here in the heady days of The Future, with a comment I made on Facebook.

"I lost ten pounds in the week since I was at the doctor. No joke. Perhaps I should let this infection linger a little longer."

The short version of backstory is that for the past week and a half, I have been sick. REALLY sick, actually, with a one-two punch of what the doctor wanted to call pneumonia but which I weaseled her down to bronchitis (because I am so very very charming, no doubt) and a wicked sinus infection. The bronchitis was under control fairly quickly, but the sinus infection, my very first, lingered painfully and disgustingly. I'm going to skip the details, but suffice to say that due to a near-constant nausea, I had very little to eat that week. When I returned to the doctor for new, hopefully not-pretend antibiotics, the nurse weighed me, and yep. I had lost exactly ten pounds in the course of a week.

So I posted that fun little status update. There are two parts to it, which I believe can be identified as a) the "silver lining" part, and b) the "obviously a joke" part.

Well, maybe not entirely obviously. Someone left what I felt was a passive-aggressive response, linking (without comment) to "How To Spot Fat Talk So You Can Stop It". When I called her on it, she took the "oh, I'm just saying…" approach, and that pushed my button, I guess. Don't walk in the room, release a flatus and then pretend it wasn't you. She said she found "fat talk" to be toxic, and I guess it didn't matter that I was talking about myself, and that no, I wasn't actually advocating the use of illness for radical weight loss.

Because here's the thing: I didn't make a choice. Getting a nasty infection wasn't part of my plan. I didn't stop taking my antibiotics or stick Cheetos up my nose. I was sick, it sucked a very great deal, and I didn't eat much. I didn't really understand how much weight I was losing because I wasn't changing out of my pajamas much. I was a delightful treat; if you had knocked on my door this week, when I answered the door, you wouldn't have thought "Sexy MAN!" You might have phoned up the Centers for Disease Control after you finished spraying Lysol in your face.

I'm going to be blunt. She seemed like a perfectly nice person, but I found her point to be extremely unconvincing, as was another comment by someone else later. Because, again, it was a joke, and again, it wasn't a joke at someone else's expense. You can't just show up on someone else's Facebook page and take their self-referencing, self-deprecating humor and sanctimoniously apply it to yourself. Well, you can, but I'm not sure why you would want to.

Anyway, the whole thing got a little out of hand. (Trust me, you want to read that. I'll wait.)

Fun Internet kookery aside, weight is a tricky issue to discuss publicly. I know that in the "fat-o-sphere" (I really did just type that), there are a lot of specific rules for how these discussions are supposed to take place, with lots of trigger warnings and the like. I know none of these rules, and I'm not sure I care to learn them. Not because I'm a dick (or not JUST because, if you prefer), but because the weight issues I'm discussing are my own. I'm not sure I need a set of guidelines to talk about me.

I've always had issues with weight, ever since I was a kid. And while I've never been morbidly obese, I can't remember the last time I was exactly fit, either. I'm going to use some actual numbers today, since I'm sitting at the low end at the moment. For scale, I am six foot, two inches tall and possess all my limbs and parts in the usual proportions.

At my worst, during what might be termed my "County Fair" days, I weighed 280 pounds. No joke. I remember that day, when I stepped on the scale and saw that number. I was young, too, maybe twenty-six or so. I spent the prime of my youth eating and (more to the point) drinking as if an alien invasion were imminent. All I got for my troubles was about ten years of photos I will never show anyone, and well, yeah, perhaps a little type 2 diabetes. (That was a joke, too. I come from a long line of genetic diabetics, although I certainly tossed enough gasoline on the fire.)

By the time I met Julie, I was way down from that, maybe 250 pounds. I lost a bunch of weight when I was diagnosed with The Beedies at 37, but then I published a book and ate and drank a lot and gained pretty much all of it back. The last time I really remember weighing myself was about a year ago, and I was at an unpleasant 245.

Now here's where it gets fun. Last week, when I went to the doctor, I was surprised to find that I weighed 223 pounds. I knew I had lost some weight; my clothes told me that. But twenty pounds, for nothing? I was pleased.

When I went back to the doctor exactly one week later? 213 pounds. That's not all that far from my doctor's target weight for me. The last time I weighed this little, I think I was still receiving lunch money.

For those of you who also have had weight issues during your life, however, you understand a kind of universal truth. Numbers don't always mean a whole lot to a fat person. Not good ones, anyway. And when I say "fat person", I mean that in the same way that someone who has been clean and sober for twenty years still self-identifies as an alcoholic. Sometimes you can tell the formerly fat person by the clothes they wear, at least a size too large, as if they don't trust what their own senses tell them in the dressing room. I imagine sometimes you can identify the formerly fat in the ranks of the extremely fit and healthy. They watch those numbers closely, perhaps a little grimly. Their own silent exercise mantra might be "Never again."

You can be the obscenely rich CEO of a major corporation, but you can still probably list the names of the bullies who made fun of you when you were a little fat kid. You can have the most beautiful and successful man or woman on your arm at an elegant dinner party, but if you close your eyes, you can clearly see the faces of the pretty girl or the handsome boy who turned you down in school with a barely-concealed smirk on their face, the universal "As if!" sneer.

And if you were a fat kid who discovered early on that you could make people laugh at the jokes you made instead of the shape of your body, then you made sure to hone those skills. You learned to make jokes, and not just innocent ones, either. You learned that the easiest way to deflate a bully was to get the crowd to laugh at him instead, so you developed a sense of humor with an edge, and you never forgot how to use it. And you never ever forgot that if you really wanted to be funny and to keep yourself in the good graces of others, you saved the most biting jokes for yourself.

And when someone shows up on your Facebook page to tell you to use nice words when you talk about weight issues, even when you're talking about yourself, you push back. And you should. Because no matter what your size now, you're a fat person. And you're not about to let someone who (in your mind) apparently hasn't figured out How Things Work take away your own best defenses simply because when they see "fat talk", they take it to heart, as if every conversation about fat people is a conversation about them. As if the warm embrace of "The Fat-o-sphere" is the only place one can find relief, with words of acceptance and maybe some denial, but never anything harsh or sad.

Some of us, and I'm going to say that includes a lot of you reading right now, some of us learned a different way. And whether we hide our fat person past or joke about it or sweat and bleed it away at the gym, we at the very least own our fat person in our own way. If you're a fat person and you try to change that, you might be a well-intentioned person, but you really ought to know better.

Yours truly at 213. Don't get too accustomed to it...

April 11, 2012

Andy Richter Saddens the Universe

When we talk about the dehumanization of people with disabilities, there's a general dismay that receives a certain amount of lip service, but there's a sad reality, too. Not every slur against every disability receives the same amount of outrage. Not every lobby inspires the same level of hesitation from those who might be considering making a joke in a film or on television or wherever. Some of our tribes are very, very small. The number of fists we can shake at the sky is limited.

Which is probably why comedian and Conan co-host Andy Richter didn't hesitate to make this joke earlier tonight:

@Andy_Richter
RE: the-baseball-cap-that-fits-over-the-tops-of-the-ears trend: is microcephaly now considered sexy?

There are a few reasons this bothers me, some of them very personal. But let's get this out of the way first: Andy Richter is a smart and funny guy. And that's part of the problem here. When someone like Tracy Morgan makes some joke about "retarded people", we are outraged for sure. But on some level, we might also look at both the joke and the comedian and say, "Well, honestly, that's pretty dumb."

But Richter has been one of the more intelligent and on-the-fly funny personalities on television for a long time. And there's something about this joke that seems especially cruel. The joke doesn't work (inasmuch as it works at all) unless you know about microcephaly. The joke is that persons with microcephaly have small heads. Get it? And to make this joke, Andy Richter had to be completely aware of what microcephaly is.

Of all the problems with this joke, awareness isn't one of them.

A few harsh points, then. When Richter asks if microcephaly is now considered sexy, he's kidding. If he wasn't kidding, however, the answer would be mostly no. It's not sexy because the word "sexy" is probably only really appropriate when applied to adults. Persons born with more pronounced microcephaly don't generally make it very far into adulthood. Many of them die young, buried by their heartsick parents.

I had the opportunity to meet with a great many of these parents and their amazing children a few summers ago at what is now called the Microcephaly, Lissencephaly and Polymicrogyria Convention, a huge labor of love presented by the Foundation for Children with Microcephaly. I got to know some of the most amazing people in the world at that conference; it literally changed my life.

And I learned to appreciate just how closely their world intersected with mine. At this conference, kids were examined by some of the top experts in the world, including Dr. William Dobyns, the doctor who diagnosed Schuyler's polymicrogyria. (The first thing he did when he met Schuyler in 2005 was measure her head to rule out microcephaly.) At the closing lecture, Dr. Dobyns surprised me by reporting that aside from microcephaly, the most common diagnosis he had given out at the conference was polymicrogyria.

Polymicrogyria. Microcephally. Lissencephaly. Not many advocacy groups for these monsters. No telethons or puzzle pieces or a month for awareness. No inspiring actors in popular tv shows. No movies about a Very Special Child. And no hesitation by a popular and successful tv comedian to make a joke about them, a joke that his clever fans might have to google to even understand and laugh about.

If Schuyler's disability were one that showed on her face, if she were shaped differently because of the little monster in her brain, then perhaps a famous comedian could make a joke about her, too. Perhaps I should feel lucky. Lucky that Schuyler can hide in plain sight, lucky that her appearance doesn't bring out the worst in others, lucky that she might just get to grow up without going to a movie or watching tv and seeing herself as the punchline to a joke.

But I don't feel lucky. I feel sad, mostly for the friends I made at that conference three years ago. Some of those friends have probably buried their children by now. Those who haven't probably don't have the time or the energy to be outraged at Andy Richter's monstrous, stupid joke. I'm sad for all their beautiful children, and for all the kids out there whose disability marks them in a way that attracts pointing jackass fingers. I'm sad for all the ones who can't understand the jokes that are being made, or are even aware that they are being mocked at all. That makes it worse in my eyes, not better.

Once again, I feel like the world really isn't ready to make space for our kids or our families. There's a table, and that table is set for the empowered, and it's even set for the disenfranchised.

But only if you're human. Only if you're better than a punchline.



UPDATE, 11:30am

About an hour ago, Andy Richter removed the offending tweet. It it's place, he made the following statement:

I offended a lot of people yesterday with a tweet using the word "microcephaly". It was not my intention to mock disability. I normally am not bothered by offending people, but in this case, I am. I make jokes, and this was one I shouldn't have made. I apologize for my insensitivity in this instance.

I can't speak for anyone else, but I would like to thank Andy Richter for this gesture. We all have a lot of growing to do, myself as much as anyone.

February 13, 2012

Alone

It began with a simple question at the grocery store last night. We were choosing all the pieces for Schuyler's lunch and were trying to change things up a little. We wanted to get her some new drinks but were unsure if she would be able to open the bottles. Schuyler's polymicrogyria has some big features and some small ones, and one of its less frightening but still annoying impairments involves her fine motor skills. We asked her if she thought she would be able to open the bottle. She said she thought so, but still seemed a little unsure.

"Well, if you have trouble, you can ask one of your lunch friends to help out, right?" I asked, remembering that one of her teachers had mentioned how she thought Schuyler ate lunch with some friends.

Schuyler sighed and simply said, "No."

"Why not?" I asked.

"Because I always eat lunch by myself."

And there it was.

We told her that we'd heard that she had friends that she ate with, but she shook her head. "I eat by myself every day," she said. "No one will eat lunch with me."

It was an emotional ambush, this conversation, and it took the wind right out of our sails. I don't know why we were surprised by this variation on a sadly familiar theme in Schuyler's complicated middle school life, but of course we were. It's happened before, that thing where someone told us a Maybe Thing ("I think she eats with a little group of friends..." or "She could go on to live independently one day...") and our desperate parent brains translated it into a Definite Thing. We can't stand to think of her being alone, so we allow ourselves to believe that of course she's not alone. I've written about how Schuyler's relationships at school are different, but it never occurred to me to imagine her sitting at the lunch table all by herself while the mass of chattering classmates swirled around her, past her, without her.

I didn't know how she would react to the offer (I could only think of how I would have responded to a similar proposal in my youth), but I asked her if she would like for Julie or myself to come to school and eat with her. She surprised me a little by saying yes immediately. As we continued our trip through the store, she asked me again a few times.

"Are you going to come eat lunch with me?"

Later, as we unloaded the groceries from the car, Schuyler looked at me and simply asked, "Why doesn't anyone want to be my friend?"

Because there were some pieces of my heart still intact from her earlier confession about her solitary lunches. They needed breaking, too.

I wish I could say that Schuyler's situation is unusual, but any time I've mentioned this on FaceBook or Twitter, I hear from other special needs parents and grown persons with disabilities, about how yes, their kids had no real friends, certainly no neurotypical ones, or how they themselves had grown up thusly. Some writers with disabilities told me that as adults, they still struggled to find friends, or had given up altogether.

A recent study by Dr. Anne Snowdon shocked exactly none of us when it revealed that more than half of the Canadian children with disabilities that she studied had either only one friend or no friends at all. Only one percent of the kids she studied spent an hour a day with a friend. By the time they turn ten, social pressures diminish most of whatever efforts neurotypical kids may be making to connect with their disabled classmates. The window closes, and rarely opens again.

My reaction to that study was the same as many of the parents I heard from. I was mildly surprised that the number of special needs children who DO have friends was as high as it was, frankly. But then, these are polite Canadian kids who haven't been taught their whole lives that their value and that of their friends and social groups is measured by how very very exceptional they are.

With all the loving adults whom she loves and who love her back so intensely, and with so many people on the Internet pulling for her, it's hard to imagine a kid like Schuyler having difficulty making age-appropriate friends. It's also unfair of me to blame her classmates, even though I guess I just did. These are twelve year-olds, they have so little experience with concepts like inclusion and compassion and intrinsic self-worth. In the Lord of the Flies world of middle school, they are all trying to keep up, and their world is one of communication, fast and fluid. They may simply lack the ability to slow down and connect with someone like Schuyler. I get that.

It's not easy for her, like it's not easy for most special needs kids. And while Schuyler seems happy enough, it is becoming clear that this matters to her more than she generally lets on. I feel like she's waiting on a solution from us. As she should.

We're exploring some mentoring programs that might be able to help, such as Best Buddies Texas. There aren't any middle school chapters in Texas at this point. Well, there ought to be. Maybe it's time there was one, and who better to lead that than Schuyler?

When Schuyler asked me why no one wants to be her friend last night, we brought in the groceries and sat on the couch. While she leaned against me, her head on my shoulder, I tried to explain the best I could that it can be hard for people to make friends with someone who is different like she is. It's not always that they don't want to, I said, but spmetimes they're just not sure how.

She seemed to understand why that might be, even before I said more. "They talk so fast," she said. 'I can't talk like they do."

I didn't have any great answers for Schuyler, and I didn't pretend like I did. I could only tell her that yeah, this is hard, but we'd think of something and we'd find a way to make things better. As has been the case many times before, she didn't seem disappointed by that sad, shitty answer. We could fight that particular monster another time. I think mostly she just needed to put it out there.

February 6, 2012

Simple gifts and sleepless nights

Monday is upon us, and with it a new post at Support for Special Needs. We had a moment this weekend, a simple and lovely moment before Schuyler's monster showed up and wreaked havoc on her. I am hopeful that the moment will live in her memory longer than the rest. I think it will.



Addendum, written on Sunday night, after everyone went to bed)

I've got more to say, I guess. My apologies for the tone being pretty much the polar opposite of my SfSN post. It happens.

A few hours after the incident I described above took place on Saturday, Schuyler had what we believe was another complex partial seizure. Not a bad one, and she was distracted by a case of the hiccups and a case of the giggles shortly thereafter. Do seizures give you the hiccups? Or the giggles, for that matter? Fuck if I know, but at least she bounced back from the seizure.

But then on Sunday, she had another, and it was bad. Bad like she hasn't had in a long time. The details would embarrass Schuyler, but it shook all of us up pretty thoroughly. It happened when she was by herself in the bathroom at a restaurant, too, and if Julie hadn't been there to go in and check on her, I don't know how it would have gone down. So does this mean that Schuyler, a twelve-year-old girl with a fierce independent streak, can't go to the bathroom in public by herself anymore? Maybe it does. And that kills us.

Early this evening, Schuyler's rough day finally ended in hysterical tears over what was actually an extremely minor situation. I think she just ran out of Schuylerness and needed to cry some "I fucking hate my monster" tears. As for me, my own personal definition of heartbreak has been updated now.

I'm going to be blunt now. When I go online, I read a great deal about accepting and even celebrating the neurological and physical tweaks that make kids like Schuyler different, and for the persons with disabilities and their families for whom that approach feels appropriate, I say good for them. Really, I do. I'm not in the position where I think I should tell other people how to face disability, either their own or that of the ones they love, and I would hope that I could expect the same in return, although I am all too aware that I can't, not always.

But let me make something clear, as if I haven't already. Schuyler's polymicrogyria makes her unique, but it also robs her of much of the life that she wants to live. It doesn't make her a special snowflake. It takes away her speech and leaves her working like mad just to make herself understood, and infinitely more distressing for her, to understand that world for herself. In a school full of preteen girls whose social existence revolves around communication and a growing maturity that she does not yet have, Schuyler is at a remarkable disadvantage, and she knows it. God, does she know it. "I want to talk like everyone else," she said again over the weekend, this time to Julie. She has a developmental disability, but she gets it, with growing clarity.

Schuyler probably wouldn't understand the nuances and complexities of the concept of neurodiversity, but I feel relatively certain that she would reject it entirely if she could. Schuyler doesn't want to celebrate her differences. She wants them to fucking get out of her way. And now, as always, my chief frustration as her father is that I am powerless to give her that. All I can contribute to the fight against her monster is to write about it, and all that really does is validate the fears and the anxieties of parents with kids like her, and to clarify things a bit for everyone else.

But for Schuyler, though? All I can do is be there to clean her up and dry her tears, and to tell her that yeah, I understand that it sucks, but there's nothing that can be done to change it so she just has to work harder to make her way in this grand rough world. And that's a shitty, stupid answer, but on this particular multiple choice quiz, there's the truth, and there's a bunch of lies, and while some of those lies might be comforting and cheerful, they are still lies, and I simply won't tell them to her.

What I really want her to know is that I would step in front of a train if it meant that she could live the rest of her life without her monster. I would do so without hesitation, and if they looked on my shattered face afterwards, they might even find a smile. But that's not an option. And on nights like tonight, that is hard to bear.

Post-Ictal Puppy Bowl party

October 9, 2011

"If I were you, I'd go punch someone in the face."

Because poor people still like to occasionally have nice things, I tried to get an iPhone.

Because big, weaselly companies don't like to play fair with poor people, I did not in fact get one.

First, a little backstory. A couple of months ago, on the day I was leaving for a conference in Utah, my silly little purple Blackberry died dramatically, complete with heat and a delightful burning smell. I immediately took it to my local Sprint store and was met at the counter by a young man whom we will call Sprint Weasel Prime, since it is with him and his actions that our story really begins and ends.

This Blackberry was never a good one. I purchased it in a pinch after the failure of my previous phone, and its only real selling points were that it was cheap, and it was purple. And over the course of a year of use, it really only excelled at being purple. Still, its death was dramatic, taking out both the battery inside and a second battery installed by Weasel Prime. It was frankly the only impressive thing it had ever really done. Well-played, crappy purple Blackberry. Well-played.

Weasel Prime went in the back and checked inventory or played Angry Birds or whatever they do back there, and after a few minutes, he came back and informed me that the purple Blackberry could be neither repaired nor replaced. The only solution was a new phone, but WOO!, there was a different Blackberry that I could get for free, using my upgrade, which had been sitting unused for a couple of years. Given that my choices were apparently to do this or carry a broken, occasionally smoke-emitting purple phone, I went with this option, the only one I was presented with. Our transaction complete, I bade farewell to Sprint Weasel Prime and went phonefully on my way.

Fast-forward to last Friday, when I went online to pre-order the brand new iPhone, available for the first time from Sprint. According to the Apple site, it would cost me about two hundred bucks.

Except no. Apple redirected me to the Sprint site, where I was informed that the new iPhone would actually cost me a cool six hundred and fifty real, non-boardgame American dollars.

You know why, and I should have as well. It was because Weasel Prime used my upgrade to replace my crappy purple Blackberry with a slightly less crappy one. (To be fair, as an excited Weasel Prime had pointed out, it IS a flip phone, which I suppose is good if you frequently butt-dial or like to pretend you're Captain Kirk.) As a result, my only options for getting an iPhone were to sell a kidney on eBay or wait until June.

The customer service representative I spoke to on the phone was incredibly nice and understanding; let's call her Huggy Weasel. She admitted that Weasel Prime was completely wrong to say that using my upgrade was my only option.  Under my service agreement (for which I'm sure I pay a little something something every month), I was entitled to a replacement phone, either refurbished or a close equivalent model, albeit probably not purple, alas.  She went further, too, admitting that the company was 100% aware that many of their sales associates in their stores were doing the exact same thing, mostly to get existing customers out the door and free up some face time for new, revenue-generating customers. Sadly, she concluded, there was nothing she could do for me. I would have to go back to the store and get them to make it better somehow.

"If I were you, I'd go punch someone in the face," she suggested.

I went to the store, although I was admittedly hoping that some non-punching options might present themselves. Once I started talking to the guy we'll call Mule Weasel, I began to understand why Huggy Weasel recommended fisticuffs.

Mule Weasel did not budge. He did not even admit that using the upgrade the way it had been used was wrong. He presented an immovable wall formed in equal measure of bricks made of "I dont know" and "We can't do anything for you here". If there was one emotion visible on his face, it might be deep regret that my name wasn't Robert Go-Fuck-Yourself, because that was clearly what he wanted to say to me.

My favorite moment? When the original Weasel Prime lumbered over, listened to our conversation and said, with a little touch of hurt in his voice, "When I used that upgrade, you actually thanked me!"

"Well, if I'd known you were screwing me, do you think I would have thanked you?" I left shortly after that.

My final conversation with Sprint took place as soon as I got home. I called and spoke to a number of representatives. They probably don't warrant names here because the only thing they really did was escalate me up the chain. They didn't do so quickly; by the time I made it to the third rep, I felt like I was crawling up the side of Mount Doom, on a quest to throw my fancy flippy Captain Kirk Blackberry into the fires from whence it was forged.

The last time I was put on hold, it was for, and I kid you not, FORTY MINUTES. I think any time you're on hold for longer than five or ten minutes, you start wondering if the customer service representative is just hoping you'll lose hope and go away. So yeah. Forty minutes.

Finally, I found myself speaking to the Final Arbiter of Customer Service Issues Weasel. The Final Arbiter Weasel repeated my story back to me (with a few passive-aggressive "You claim"s thrown in) and then presented my options. They were as follows, in no particular order: I could 1) cheerfully pay $650 dollars for an iPhone, 2) cheerfully wait until June and use my miraculously regenerated upgrade to get an iPhone, or 3) break my contract and cheerfully pay the steep financial penalties for doing so. He also made it clear that I had three further options, which could be best expressed by replacing the word "cheerfully" with "grudgingly" in the first three options.

One thing I've learned over the years is that when you're on the phone with a customer service representative, you have one little piece of power, just one: they are almost never allowed to terminate a conversation until you agree to do so. They can put you on hold for forty minutes, they can present an implacable wall of NO, they can be condescending, and I suppose they could just sit there making little fart noises while you talk. But unless you swear at them, you can almost always say whatever you want for as long as you want and waste as much of their time as you feel like wasting. That's a free tip, kids. You just learned something!

To finally get me off the phone, the Final Arbiter Weasel offered to email the district manager for Weasel Prime's store and let him address it however he saw fit. And here's where my favorite conversation in this whole story took place.

Me: Can you copy me on that email so I can follow along?

Final Arbiter Weasel: No, I can't do that.

Me: Huh? You can't copy me on that email? Really? Why not?

Final Arbiter Weasel: Because... the email's going to contain proprietary Sprint information.

Me: What? Your email about my case is going to contain secret information? What could that possibly be?

Final Arbiter Weasel: Um, it's the how the email is formatted that's proprietary.

So there you go. Aside from this call that I'm never ever ever going to receive from the District Manager Weasel, I think that's about where things stand now and forever. I can either go away quietly, or not go away not quietly, but it's pretty clear that despite the admission of Sprint's own representative that the original action taken by Weasel Prime was inappropriate and unfair, the official stance of Sprint is "Tough titties, customer."

Now let me be very clear. I understand completely that this is a very First World problem. I know that families face big problems every day that are much more important than this. But you know what? We're one of those families. Just because ninety-five percent of my blog posts are about Schuyler and our neverending quest to help her live a meaningful life in the face of real tooth-and-claws unfairness doesn't mean that when people behave like tools, I'm going to say "Well, this certainly doesn't compare with worrying about seizures or Schuyler's education or her future or whether or not she's going to be eaten alive by this grand rough world, so no problem."

Actually, I think for special needs parents, the opposite may be true. We spend every day of our lives waging battles that we mostly expect to lose or at the very best fight to a draw. And by every day of our lives, I mean right up until the day we die, when our last thought on this earth may very well be "What will happen to her now?"

So speaking just for myself now, when I'm confronted by forces driven not by invisible, implacable monsters but instead by flesh and blood humans whose only power over me is in what fucking PHONE I can use, do you think I'm afraid? Do you think I'm likely to give up quickly, or at all, when I'm treated unfairly by a sales associate in an ugly golf shirt with a corporate logo printed on his moob?

Do you think I'm inclined to stop fighting that little fight even when it's pretty clear that I'm not going to win? When the only thing I can do to address my grievance is to do my best to convince as many others as possible not to do business with a company engaging in unfair practices? Do I quit because it's a small fight, in the shadow of my family's larger ones?

No, I'm really not so inclined. And if that makes me a dick in your weasel eyes, that's probably true. But I'm the dick that the world has made me. Well, mostly.

See you in June, Sprint.

-----

(Note: I would like to extend my deepest apologies to any weasels, ferrets, martens, ermines, minks, otters or stoats who may have been understandably insulted by my metaphorical representation of these particular employees and agents of the Sprint Nextel Corporation.)

"Dude.  Uncool."

August 9, 2011

Just a Word: The Change-Up Edition

(Note: After some private and refreshingly non-shouty consultation with persons more familiar with the particular issues surrounding self-advocacy by persons with disabilities, I can see now that this wasn't a terribly well-written post. In particular, it lacked inclusivity, which, given how hard we've worked to create an inclusive environment for Schuyler, was a particularly obnoxious oversight on my part.

I hope that the larger point I was trying to convey isn't lost. Regardless, I apologize to those who felt slighted by my limited perspective. Like any other parent advocate, I stand astride two communities, those of the neurotypical and the disabled, and I don't always feel like I fit in or represent either one of them all that effectively. But I do try, and I will continue to try to improve.)





Well. Let it never be said that the entertainment world isn't committed to providing material to blog about.

From "The Change-Up", from Universal Pictures

Mitch Planko (Ryan Reynolds), about his friend's twin babies: "Why aren't they talking? Are they retarded? This one looks a little Downsy."

Let's dispense, for the moment, with the usual debate about freedom of speech or how comedy supposedly works or whether or not anyone needs to lighten up or pull a stick out of their butt. Instead, let's write a story. We can even pretend it's fiction.

Imagine a parent with a child who has Down syndrome. I actually have one in mind, a strong and positive writer whom I've become friends with over the past few years. But you probably have your own friends or acquaintances you can imagine.

So let's say it's a mom, one who spends her days, her years, taking care of a child, a very special child in every sense of the word. She loves this child the way most special needs parents love our children, which is to say, with equal parts gentleness and ferocity. She understands what the lesser of her fellow citizens of this rough world thinks of her kid when they see the evidence of disability stamped on a child's face but don't bother to look beyond. Perhaps she knows better than most how this attitude diminishes the shallow observer, not her child. Maybe she's found that peace.

Let's imagine that this mom likes comedies, and not just polite ones, either. Like most special needs parents, she probably engages in quite a bit of dark humor herself, the jokes and remarks made to her spouse or other special needs parents and no one else. She appreciates edgy humor, and she liked The Hangover, so when a new movie by the same writer comes out, she decides to take a few hours out of her weekend and go see it.

Perhaps her husband watches her child for her while she's at the movie theater. It would be nice if they could go together, but that's a luxury that's not afforded to every special needs family. If she's single (as so many special needs parents are; about 75% get divorced, according to a recent study), she's had to find a babysitter. This simple act for a typical family is one fraught with anxiety for the special needs parent. Qualified babysitters are hard to find; trust is even more difficult to build. Perhaps a member of her family will watch her child, but that's not a given, either. Many special needs parents have family members who don't get it, who have declined to watch our kids or who have made statements that we'd expect from fussy old ladies at the grocery store. (For me, it's always the old ladies, and it's always at the store.) So a family babysitter isn't a given, either.

But however it happens, our imaginary mom finds a way to go see The Change-Up. She's there, sitting in the dark, laughing at the movie, enjoying herself and pushing down the guilt, that feeling of abandonment that we feel when we dare to spend time doing something for ourselves. Perfectly reasonable, this time away, yet it's hard not to feel as if we've left our child unprotected somehow.

That feeling of leaving her child undefended suddenly swells when she hears it. "This one looks a little Downsy." Our imaginary mom is suddenly confronted with a room full of people, laughing right along with famous faces on the screen, in a multi-million dollar production worked on by thousands of people, approved by studio executives, writers, actors. All those cinema professionals, and none of them, NOT ONE, ever said "You know, we're making fun of purely innocent, absolutely blameless people here. We're making a shitty joke about people with disabilities, people who are brothers and sisters and sons and daughters of the moviegoers who are going to pay money to see this film. That strikes me as a dick move. Maybe we shouldn't do this."

Because this simple recognition of the absence of basic human dignity has not occurred to any of the decision-makers of this giant Hollywood production, our imagined mother sits alone in the dark, and she understands all over again, as if she could ever really forget, that a large segment of society, of the people she walks with and works with and attends church with right alongside her child, this chunk of society finds humor in her child's disability. They think her family's pain is appropriate as a punchline. This mom was right here with them, and does that make her complicit? She thinks maybe it does. Maybe she gets up and leaves the theater in the middle of the movie. Maybe she goes home to her child, feeling more than ever that her place is here, not out there with this great invisible THEM, the ones who will always place her and her child and her family apart.

But if people laughed, I suppose it works out okay when you do the studio executive math.

Again, I'm not asking you not to engage in this kind of humor. It's your soul, after all. You're the one who has to figure out what you're willing to do for a laugh, to fit in with the cool kids, and still sleep at night. But here's what I would like for you to do, if you're asking, which you're probably not.

If I ask you to close your eyes and imagine the kind of person who would casually use the word "nigger" to describe another human being, there might be some variation of the character that any one of you would build in your imagination, but I seriously doubt it would be someone you'd admire. I don't think you'd create the mental image of a person you'd trust your kids with, and I certainly don't think you'd imagine yourself.

When the greater part of society reaches the point where that exercise of the imagination would have the same result with the word "retard", we'll be on our way. That's what I'd like. It really is exactly that simple.

And "downsy"? That's vile. If you laughed at that, please go live in a hut somewhere, far far away from actual human people.

July 12, 2011

Rabbit, Run

("Black in White" by Luke Chueh)

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

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

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

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

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

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

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

You know where this is going, I know.

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

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

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


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


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


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


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


Regretfully,
-Mike

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

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

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

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

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

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

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

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

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

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

July 1, 2011

Why we fight.

This is why it matters.

From Courthouse News Service:

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

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

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

[...]

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

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

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

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

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

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

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

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

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

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

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

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

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