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.
