I'm not going to try to pretend I'm hopeful, or that I believe the inherent goodness of my fellow citizens of the world is going to be our salvation. Maybe I should. Perhaps the first step to making it rain is seeding the clouds, I don't know. All I know for sure is that if 2017 is going to be survivable, if we're all going to get out of this intact and not epically broken, it's going to be because we did two things. Two things, just two, that's what I believe is necessary. They're easy, and they're hard. We need to take care of ourselves. And we need to take care of each other, in a very meaningful and personal way.
You know the truth, which is something we've always tried to give you no matter how hard a truth it might be. You understand the life that your little monster has made for you, or has attempted to make for you, anyway. You've simply refused to accept those limitations as concrete. You've shamed those of us who've tried at various times to define the limits of the person who you can become. For that above everything else, I'm proud of you, heartburstingly so.
Protest forms special needs parents into people we would not otherwise be, and sometimes honestly never wanted to be. We become accustomed to advocacy, to stepping up when doing so makes things weird for everyone else. We learn not to care about the awkwardness, because our protest is God's work, it's in the service of the thing that we do that matters the most, the building of an equitable place for our children to operate. Others may care, others may love our kids and want the best for them, but no one else bears the responsibility to get things right like we do. When our kids grow up, many of them will move in various degrees towards independent life, and more important perhaps, lives that have meaning, and personal fulfillment. Our kids will require accommodations in a world that is loathe to provide them, either in services or equal opportunities or even just a social narrative in which they are allowed to be fully human. The world pushes against our disabled kids, and so for as long as we are able to do so, we protest, and we push back.
The world of a teenaged girl with a disability is complex, in ways that aren't cute or sitcom-ready. We've discussed many times how dangerous the world is for women with disabilities, and how vulnerable they are to sexual abuse and assault. It's terrifying as a father; it's more terrifying for a young woman with a disability, and Schuyler is old enough to understand what's going on now, and what's at stake. Ten years ago, she was worried about werewolves. That's not what's waiting for her now, though.
Through it all, Schuyler doesn't spend a lot of time reflecting on the hard stuff, certainly much less than her moping, sad-sack father does. She sees a world that she doesn't entirely understand, and she grabs at it, claws at it for the riches it hides from her. She adores her friends, even when their behavior baffles her. She trusts in people, right up to the moment they let her down, and then a bit more after that. Schuyler loves her family, and that includes her godparents and the people she has made a family space for in her heart, with a depth and unashamed loudness that I've literally never witnessed in another human being ever. I'm not objective in my admiration of Schuyler, but I'm lucky enough that I simply don't have to be. I have the honor of being the father of the most amazing person I've ever known, and I might forget to be thankful for all the other stuff, but never ever that.
But the days roll past, and the Big Scary Thing becomes more and more background as the Many Small Monsters continue their work. We don't make peace with it, because when we close our eyes, it's always there. ("Ah, I can't remember!" cue laughter...) But we push it back as best we can, because the life he's mocking is a hard life, and it's hard and time consuming no matter who's the president. Our monsters aren't all that concerned with politics. Our devils don't vote.
When Schuyler gets up tomorrow and faces her weary and deeply disheartened father, she will be told that what's wrong with America isn't those like her who are different, or who insist on their humanity without limitations. What's wrong with America doesn't belong to her.
I hate this election season, like I hate anything that I find difficulty in explaining to Schuyler not because it’s complex, but because it’s just kind of bad. I feel like every time she hears me explain why a person running for president would lie or mock someone who’s different or say gross things, it dents her a little. Every realization that the world can be awful leaves a little scuff. I hate trying to make sense out of a nationally known comedian going on television and using hate speech to tell the world that she and her friends aren’t fully human. I hate having to tell her that someone wants to be president of her country but they probably aren’t good enough at heart to deserve that job. I hate trying to distill a hard world into something she can digest. I hate having to sell injustice as one of those things that she’s just going to have to accept sometimes.
I love Schuyler's brain, which might seem like an odd thing to say, given her own uneasy relationship with it. Schuyler's brain isn't like yours or mine, or anyone else's. It's broken, dramatically so, but that's not even close to the main point. The story of Schuyler's brain isn't that it's broken, but rather the extraordinary things she's accomplished with it regardless. Schuyler walks and dances and sings, and she laughs three distinct different laughs, including the one that I love most, the one I call her troublemaker laugh. Schuyler plays percussion in band; every autumn Friday night I watch as she plays the suspended cymbals, and I see her play at exactly the right moments, contributing the rising metal shimmer as the musical phrases of Carl Orff's epic Carmina Burana (music that originated inside his gooshy German brain, too) crest and ebb. Schuyler operates an iPad; her brain translates her thoughts into words on a screen, or in a text message with a dizzying array of digital stickers attached, because she's moved so, so far beyond emojis. Schuyler's brain drives her creativity, and it makes her go a little crazy for the boys, and sometimes the girls, at her school. Her brain gets sad, it becomes paranoid, and it makes extraordinarily poor choices from time to time. But it also contains all the love she has, a love that is big and fat and boundless and childlike and complicated all at once. I describe Schuyler as having the biggest heart in the world, but of course it's her weird but wonderful, inexplicably broken but beautiful brain where that love resides, right there next to her confounding little monster.
Years from now, I hope we see these small expeditions as the beginning of Schuyler's true adventure, the one she takes on by herself, in a world that may be as unprepared for her as she is for it, but which will be hers for the taking nevertheless.
I've written many times about my duty as Schuyler's parent to be an overbeliever for her. I still think that's true; indeed, I hold that to be an essential truth more now than ever before. I find that if I believe Schuyler's capabilities reach beyond what we can see in the now, the rest is likely to follow. There was a time when we were told that Schuyler would never be able to write, or use a high end speech device, or even attend school, for that matter. Trying to accomplish more than that was considered overbelief by the physicians and educators and therapists in her life. It's tempting to say that it's a good thing we didn't accept those limits at the time, but honestly, it wasn't even a choice. When your parental instincts call bullshit on expert opinions, you go with your gut. If you're right, boo-yah. If not, you regroup and you go on.
I feel like there's been a subtle shift in how people with disabilities are perceived in the popular media. I think I heard more about the Paralympics in the media this year than ever before, although still not enough when you consider the extraordinary work the athletes put in. On-screen portrays of people with disabilities are becoming less of a big deal, although again, there's a lot of distance left to cover. And the notorious "R Word" seems to be slowly transforming into, if not a taboo word, at least one mostly perceived as being used and defended by low class persons. Outrage at the mocking of a journalist by a politician probably raised more awareness than all the ribbons and marathons of the past year, so, you know, thanks for that. (I'm hesitant to say his name again, kind of for the same reason I don't look in the mirror and say "Candyman" three times.)
Being a special needs parent is an amazing experience, but it runs a deficit. The obstacles that society throws up. The constant struggle to be taken seriously by professionals and educators and family and, well, the world. The ticking clock that runs out way too quickly on the protective cushion our kid's childhood provides until it very much doesn't. The isolation. The pain and anxiety our children feel and our frustrating inability to explain or make right the things that impair their young lives. They learn to find their way, and we are central to that discovery. But it takes its toll.
Everyone cry out, because such a statement demands outcry. Ann Coulter stands proudly and feeds off of us, a vampire hungry for hate and sorrow and lights and cameras. But we stand up and we push back, because "standard retard" doesn't get to flutter out into the air without being swatted at. It doesn't do any good to protest, but it feels evil not to, so we speak up and then we turn back to our lives, our difficult but rewarding lives. Ann Coulter may be rich and she may be famous, but not one of us in the disability community would trade places with her, not for a moment.
Our big plans for the new school year don't always work out, and sometimes they REALLY don't (hoo boy, let's swap some stories!), but what you learn after a while is that it's the small things that sort of anchor the tent in the wind. It's doing that first walk-through where your kid maybe finds the anchor points in the building where they can get their bearings, and you get the sense that perhaps your kid won't get lost on the first day, or at least not on the second. It's that moment when you see another kid greet yours like maybe they might be friends, and they don't seem to have any obvious psychopathic tendencies or visible swastika tattoos. It might just be that small feeling, the one that suggests that this is big, but it's not too big. It's doable.
Because I am who I am, I look at Schuyler's positive new school experience, and I wonder what's the catch. But being an overbeliever in Schuyler sometimes means extending that overbelief to those around her, too. So here we go.
So many of the discussions and emails I've received lately have reminded me of how tall the castle walls can loom, and how deep the moat runs. I've been told that my opinions on politics and other topics are distorted by the experience of being a disability parent. There was the email telling me that yeah, sure, kids in special education classes need more resources, but so do kids in gifted and talented programs, and I should be advocating for both equally. I've been told that being a special education teacher or knowing people with kids with autism means understanding exactly what the lives of people with disabilities and their parents are like. I've seen, time and time again, parents of kids with disabilities told that their challenges aren't any more daunting than those of any other parents. It's the "we've all got troubles, bub" argument, first cousin once removed of "quit your bitching already". I'm reminded again and again that for those of us attempting to build lives with disabled kids while trying to live normal ones ourselves (pretty much an impossibility, but you've got to try), it's a sucker's bet to try and explain that no, it's not the same as any other family, and usually it's not even close. Put it in a hashtag if you will, but remember that #NotJustDisabledKids sounds a lot like #AllLivesMatter to us.
When I read the story of the attack in Japan, it struck me that Satoshi Uematsu’s position on the disabled as being a burden on their loved ones and a drain on Japanese society is grotesque and extreme, no doubt. But it echoes an argument made time and time again in this country as well, at school board meetings and on educational discussion boards and on newspaper opinion pages in every American community. “How much are we going to spend on special education when there are gifted and talented kids who have so much more to…” (wait for it…) “contribute to society?” Petitioning to the government to have people with disabilities “euthanized” is horrific, but it’s not an unfamiliar narrative except in its awful scale. We all own a little bit of Uematsu’s horror.
When I was younger and more earnest, I wanted the fixes. I'm older and spiritually winded now, and I'm faced with the strong will of a daughter who's stretching her wings and exploring her own choices. When we talked about the idea of acceptance, and of looking for peace rather than solutions, Schuyler understood that. She's still not done trying to reshuffle the deck, though. And as hard to read as the future is right now, I don't expect that to change even a little.
There's a lot more for Schuyler to unpack about this, some of it making zero sense at all. I'm not sure Schuyler entirely comprehends racism, except of course she understands being hated and abused or even just dismissed for being different, so I suspect racism's one she probably gets. It's hard to explain to her when she's probably safe and when she's not, because I don't know myself. Schuyler's white, she's a woman, and she has a disability. She'll probably be just fine in a way that is horribly unfair, until the day comes when she's very much NOT fine, also in a way that is horribly unfair. She has both privilege and disadvantage, neither of which is easy to explain to her.
How would Schuyler have reacted in Hannah's situation? I can't say. I imagine she would respond differently, probably shutting down in frustration rather than trying to run. But how can I be sure? How can any of us know? This is why parents of young adults like Hannah Cohen or Schuyler or countless other responded to this story with such visceral fear and anger last week. We don't know how such an encounter would go, but we've been doing this long enough to presume that "happily ever after" isn't where the smart money goes.
It's easy to think of Miracle League as a place of gentle interactions, but that's really not the case at all. The players push hard, although when someone gets knocked down, everyone goes full Chumbawamba immediately. The kids compete fiercely, but it's complicated, because they're not just competing with each other. They push themselves hard, they focus on the task at hand, and they are in a constant state of simultaneous conflict and negotiation with their disabilities. When professional athletes claim to leave it all on the field, this is what that really looks like.
When I look at the work I do, at the life I live as a father, I see a lot that I don't understand. I don't always think I'm providing what Schuyler requires, and I don't feel like I set the kind of example that she needs. She sees a father who has to watch pennies, who raises his voice sometimes, who gets impatient with the world and with her. She observes a father who gets so frustrated with the unfairness of her world that he seems to feel a kind of low-grade anger most of the time, and one who increasingly likes people less and less. I think she sees my fear. I'm pretty sure she understands how terrified I am about so many things, about a future that I can't see or understand, and about a little monster in her head that continues to cloud her future and whose fang and claw I underestimate at my very foolish peril. I'm afraid sometimes of the father she sees, of the sadness that I try so hard to hide from her and from the world.
Schuyler's view of the world is a little fantastical and a little simple. It has room for monsters, but not like these. It has room for sadness and fear, but not like this. And her intellectual disability would make it easy to punt this a bit, to file down the sharp points and distract her until the world goes back to talking about the stupid election and who Taylor Swift is dating. But I refuse to do it.
This was no pity prize. This wasn't macaroni art on the fridge, or the much maligned participation trophy that some find so hilarious. No, this recognized her individual achievement. It identified Schuyler as someone who did hard work and expanded her own personal boundaries and abilities. For that, I couldn't be more proud of her.
This award recognizes something more, however. It illustrates the tangible results of teachers who see a student like Schuyler for the possibilities she represents, not just the challenges. It gives us a much-needed example of what inclusion really can look like, not just a pedagogical buzz word but a working philosophy. It reminds us that every student has hidden abilities, and that they can be unleashed if teachers and support team members will simply look beyond what they see in the moment and dare to over believe.
I'm not sure what to think of who I am now. I'd like to look back at that younger me and say, "Oh my god, what a dumbass. He knew nothing." But I miss him. I miss being him. He felt fear of the future, but the ticking clock didn't sound so loudly in his ear. He didn't have answers, but he had time, and there was no way he wasn't going to be a warrior from that point on. He'd written (or was in the process of writing) a book about being a confused father stumbling through some mysterious darkened places, but that was over. Schuyler's monster had been sighted and put on notice.
Hate speech and its environment protect a societal belief that only those who may contribute to society in a very narrow manner are worthy of citizenship and humanity, rather than just pity. We treat people according to the worth we grant them, and the hate speech that is so prevalent in our society affords them very little value. Simple words, thrown around casually and carelessly, like grenades, like poison seeds that will blossom where they fall.
Hate speech directed at those with disabilities creates safe spaces, from which very dangerous gardens grow.
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?
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.
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.
There's something special needs parents might not tell you, although if you love us, you probably already know. We're exhausted, physically and emotionally, by the hard days, by the times when things fall apart and when our kids reach for the stars and fall to earth with a crash. But the good days, the ones where the successes outnumber the failures and there are more smiles than tears? Those days are exhausting as well. Even the successful days take a toll on us and require us to dig deeper wells than we might always be able to sustain.
The value of human life isn't defined by the perfection of the human form or how advanced the intellect and its accompanying understanding of a complex world. That's a powerful realization. In a society that places such a high but narrow value on measuring our worth by our productivity, embracing the inherent human value of even the most impaired person is a revelatory act of social defiance, and perhaps a genuine spiritual awakening.
On a good day, especially when she doesn't have to speak too much, Schuyler passes pretty successfully. There are a few outward signs of her polymicrogyria, but she masks them pretty skillfully. She carries an iPad with her at all times, of course, but these days, that doesn't exactly distinguish her from any other teenager. (Insert curmudgeonly, "get the hell off my lawn" statement here.) Like a lot of kids with intellectual disabilities, she worries about people noticing her difference and judging her for them. For Schuyler, passing is a very deliberate choice. I try to encourage her to embrace her uniqueness, but while I hope passing won't always be her position, for now, as long as it's what she wants, I'll help her any way I can, even as I know where all this leads. This is going to be a tough lesson for her to learn, but it's going to be one she learns herself. It has to be.
This week has provided a short respite, a brief interlude in the eye of the hurricane. We've been doing this now for a long time, officially for almost thirteen years but of course a little longer than that. I've learned a lot in that time, usually the hard way, but there's a lesson I keep coming back to. Hold on to the quiet interludes, the ones that feel carefree even if they're simply pauses.
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.
Schuyler is grappling with emotions that are new for her, and with the idea of relationships and a family of her own one day. It's all been so fantastical until now, and her ideas of the kind of person she might be in a relationship with are still very fluid and mostly kept to herself. ("I think I might like girls," she said timidly at one point in the interview. Sorry, grandparents.) Last week, at my aunt's funeral, Schuyler's natural sensitivity and empathy overwhelmed her a little. She wept openly for someone she's essentially never met, because she looked around and saw people she loved crying, and because she was faced with the reality of The End. On the long drive back to Dallas, she asked a lot of questions about death and the people she loved. I could tell she was thinking of her parents in particular and what the world would look like after we're gone. She's catching on that adulthood has some hidden traps, and some deep sorrows.
There are a lot of reasons I'm already disgusted and exhausted by this election season. If you want to understand, spend about twenty minutes on Facebook, or a minute and a half watching one of the debates. But perhaps the most disheartening for me right now is the intersection of politics and that old familiar ugliness, our society's propensity for using our most vulnerable population so cheaply and with so little regard for their basic humanity. I made a promise to never give my silent consent to dehumanizing our loved ones by saying nothing in the moment, and I intend to keep it. But it's sucking the life out of me, and I'm beginning to feel like if this is as good as we are, we deserve one of these embarrassments as our President. We deserve to be represented by our own kind.
There's a quote that seems to originate from a number of sources, which isn't surprising since it's not terribly original. But it is terribly true.
"You may be done with the past, but the past isn't done with you."
I returned to West Texas this week for that most compelling of homecoming reasons, a funeral. My Aunt Kay died last week. She was married to my father's brother, but she was also my mother's childhood friend. The four of them were the closest of friends, and that closeness applied to all of the cousins as well. We functioned like an immediate family; all of my childhood memories include my cousin/best friend, as well as her cooler-than-cool dad and her impossibly kind and good-hearted mom. When Uncle Tommy died in 1979 and our families drifted apart, something cracked in my family. When my father died eleven years later, that something shattered altogether. I don't think we ever entirely recovered.
Going home this week was about saying goodbye to someone who existed as a central fixture in my childhood, but it also served to try to place that childhood family experience in a larger context. Schuyler went back with me, partly because I thought it was important for her to begin trying to understand the whole end of life process but also because selfishly, I didn't want to go alone. Five and a half hours in the car from Plano to Odessa leaves a lot of time for conversation. When Schuyler asked if she had ever met Kay, I realized with sadness and shame that they had actually only met once, when Schuyler was a baby. It had been so long since I'd seen Kay, or my cousin Pam, either. Pam and I spent our childhoods basically functioning as brother and sister, and I hadn't seen her in fifteen years. Aunt Kay was part of a different life, one in which my family was whole and the future was whatever any of us wanted it to be. My life hasn't turned out like I ever imagined it would back then. Maybe that's true of us all, I don't know.
It happens, I suppose. You put your head down and you live your life, and then one day something terrible happens and you realize that you've let things slip out of your hands that never should have been treated so casually. I loved my Aunt Kay, as I loved and idolized my Uncle Tommy and as I adored my cousin. My memories of them are almost entirely from childhood, from a time so long ago that it feels slightly unreal in my memory, and from a place so unlike anywhere else in the world that it is almost impossible to describe without sounding like I'm making it up. West Texas in the 1970s really does represent a world that was very different from whatever past you probably know.
The time of my childhood is remote. The place, less so. Returning to Odessa is always something of an emotional shake up for me, but now, in the context of returning to embrace not just family but the family and the life of the past, it really is overwhelming. I sometimes turn to music to put it in perspective. Not the popular music of my youth, or the country music that was always present when my father was around. I actually associate home with specific classical pieces. Aaron Copland's celebrated Americana, for instance, like the slow movements of Billy the Kid or Rodeo or even the very end of Appalachian Spring. Big, lonely prairie landscapes in sound, albeit a little cliched.
The music I associate with home isn't about cowboys or even people, which is just as well since my ancestors weren't cowboys or romantic lawmen or heroes of the Alamo. They were the oilfield poor, living in primitive camp houses with faded, peeling paint and cheap screen doors and the occasional snake in the living room. That was my family's world, at least until my father's generation changed course. Uncle Tommy joined the army and moved to New York for a time, probably enough to get a taste for a life different from his own father's. My own father quit the oilfield after watching a friend and coworker burn to death in a horrible accident. My family grew from a hard and dirty industry, but one that hardly any of us still living have any experience with. I have petroleum in my blood, but none under my fingernails. For the first time in my life, I actually find that I regret that, maybe just a little.
Growing up there, I always understood something about Odessa, or any town out in the desert, and it's something of which I'm still very aware. Experiencing that part of the country isn't really about understanding the towns, not even larger ones like Odessa or Midland. West Texas gets under your skin when you drive outside the city limits, and not necessarily all that far, either. As soon as I was old enough to drive, I would sometimes head out to the edge of town, where imported and pampered green gave way to mottled brown. I'd eventually pull off the farm roads and follow a dirt road until I found an open spot where the mesquite bushes had been cleared, usually to accommodate a pumpjack. I'd lay on the hood of my car and listen to the rhythmic wheezing of the well, and I'd watch the sun set in a mess of vivid color and take in the sight of the stars sprawled out across the sky. Sometimes I'd see jackrabbits racing through the brush as I approached, and once I even saw a rattlesnake lazily twisting across the road in front of me. But mostly it was just silence and solitude, bigger than anything I've ever experienced since. The daunting but quiet snows of Michigan, the rolling waves of Long Island Sound, the towering Redwoods of northern California, some of my favorite places in the world, but none could quite compare to the almost oppressive silence of the West Texas desert.
When I'm not there, when I'm living my life in various cities as I have since I left Odessa at eighteen, I still feel the desert of West Texas. When I'm in large groups of people or in busy parts of the city, surrounded by beautiful chaos, part of me is still back home in wind-tossed solitude. Back in my youth with my family, including all those who have slipped away in some way or another, I didn't understand it, I don't think. I didn't really hear the weird, loud silence of West Texas.
My father did, I know that now. He longed to get out into the wilder parts, and we did, often. My father and I had a complicated relationship, as he had with most of our family, and I didn't always fully appreciate trips to the lake or the camping excursions to places like Fort Davis or Big Bend. But I guess I was soaking it in just the same, because I think I'd give just about anything to go back. Not just to the place, but to all of it, with my mom and my dad and his cool older brother who never got to be old in my memories, with my own siblings and my cousin, and with my aunt, to whom I never got to say goodbye. I never got to say goodbye to any of the ones I lost; my family hasn't had a surplus of lingering hospital deaths. Just unexpected phone calls with sad voices and then hurriedly packed suitcases. And memories, played out against that huge desert, always present.
I left the desert as soon as I was old enough, or I guess I thought I did. Maybe those of us who lived there never really get to entirely leave it behind. It speaks to me. Is that strange? West Texas has a voice, and a kind of ancient loneliness. It predates the current fracking boom that has exploded my town with apartments renting for two grand a month but which will probably be occupied by mice in a few years now that the bust is looming. It's a towering sadness that goes back before high school football and my family's departure from the oilfields, back before dusty depression era towns and the first oil strikes, before the US Army and its experimental camels and before the Mexican settlers or the invading Conquistadors before them, before the missionaries came with their god and even before the Mescalero-Apache and Comanche came with theirs. I can imagine the desert how it must have been before humans arrived at all, because it almost certainly wasn't very different at all from now.
That looming sadness comes not from tragedy or hardship, although that desert has certainly known plenty of both, as my own family knows all too well. I think it comes from that very timelessness, that sense like nowhere else in the world I've ever seen, that this world has rolled along for millions of years, and our presence won't matter for more than a blink. A few jackrabbits will hear us and scatter, and maybe our footsteps will startle a few horny toads (if we can even find them anymore), but that's about it.
And yet, those of us who lived there and those who have gone back to that receiving earth are a part of the West Texas desert. I've known so many people who have visited it and who simply don't understand how anyone could feel fondness and that low-burning homesickness for such a hard, barren place. Those of us who grew up there joke about its remoteness and its flatness and the rough people who live there, people with whom we like to pretend we have nothing in common but from whom in reality we are separated only by years and experiences.
I hear it all the time, and I've said it to myself many times over the years.
"How could you ever live in such a place?"
And then that ancient voice whispers, "How could you think you could ever truly leave?"
In addition to her natural empathy, Schuyler holds on to some fantastical ideas about her world, a place in which monsters and and magic and mysticism still play a central part in her thinking. She understands the difference between that world and the real one in which she lives, but she still copes with the hard stuff with a touch of disconnect. This week, she'll face one of the hardest things the world has waiting for her. She'll face grief, the kind that represents the natural order of things, but also a level of pain and finality that will undoubtedly challenge her.
I confess, I've worried so much about Schuyler finding her tribe, but in some ways, she's had them around her all along. I think I always envisioned a close group that hung out after school and communicated regularly and folded each other into their daily lives. I realize now that I've been looking at it through neurotypical eyes. Schuyler's tribe was never going to behave like I did with my youthful friends. Their particular obstacles are incredibly complex, and the logistics of something as simple as a trip to the mall to hang out are complicated. In the world of Schuyler's disabled friends, electronic communications and social media have become something of an equalizer, and that's where they navigate much their tricky relationships. They're all finding their way, with tools I never dreamed of at her age. Schuyler's Island of Misfit Toys is part of an archipelago.
I know there's a boy or a girl out there (probably a boy, judging from her interests so far, but never say never) who will meet Schuyler and will look past her little monster and her childlike nature, who will see what the people who know her already see. He'll recognize the hard work she'll require, but he will also understand how very, very worth it that work will be. He'll know that he's found a girl who is literally like no other in the world, a person who is unique in ways that transcend the simple individuality of every human. He'll see what a perfect friend she can be, and he'll understand that her gigantic whale of a heart is capable of such love and devotion.
As I've written before, I'm a big proponent of overbelieving. I've never been hesitant to encourage Schuyler to reach far beyond her expectations. Time and time again, she has responded by exceeding those expectations. Like Santa Claus, the encouragement that "you can do whatever you want in life, be anything you want to be, as long as you're willing to work for it" is a gentle lie told to very young children. It's one that we as parents understand will be shaped and molded as our kids get older. When you're five, it's entirely feasible that you could be a cowgirl or an astronaut one day. When you're a teenager, that conversation become a lot more real world.
This weekend was a big risk. One week after her sixteenth birthday party and the bumps in the road she suffered there, we took Schuyler to Las Vegas to attend a surprise fiftieth birthday party for one of my best friends (and Schuyler's godfather). Last weekend, she was undone by a gathering of her school friends that she basically sees every day, over pizza and games. We followed that up with a trip to Las Vegas, a place that is the very physical manifestation of the concept of overstimulation. It's safe to say that we were concerned.
I learn from Schuyler and her gigantic good heart. She teaches me every day, and mostly the thing she tries to impart to me me is simply to lighten up a little. It's a hard lesson for me; at times, I feel like my fatherly life's narrative has been written in worry. But it's the one lesson she never gets tired of giving to me.
Aside from the obvious, Schuyler has always had something of a lucky brain. It's pretty seriously affected by her polymicrogyria, but you'd never know it from seeing her. Schuyler's brain is working in ways that are a mystery to everyone, even her doctors. Areas that should be deeply impaired are functioning at high levels. Just being ambulatory is something of a miracle for Schuyler, and she is so much more than just ambulatory. Her enigmatic brain isn't simply doing more than it should. It's doing most of what it should. I hate Schuyler's monster, but God, do I love her brain.
We were in line at the grocery store (the place where all these kinds of stories seem to take place). When we reached the front, we saw our cashier, a nice, smiling young woman who had a lightweight, active-type model wheelchair parked behind her register. She and Julie chatted as we checked out, and she watched Schuyler very closely as we interacted. (I believe I was being my usual mature self.) We're accustomed to Schuyler being watched; there's a kind of "Uh oh, what's going on here?" moment with people when they realize that things are not quite what they appear with my daughter. But this time, there was no trepidation in her look, only friendly curiosity.
