Showing posts with label my big opinions. Show all posts
Showing posts with label my big opinions. Show all posts

April 19, 2017

I think I’ve got a quarter if they need one.

Today at Support for Special Needs:
Excerpt: 
Weird? How are we measuring “weird”? What does “weird” look like for someone like Schuyler? Or for anyone else? I mean, we spend weekends driving around looking for invisible monsters to catch with our phones. Our threshold for weird might not necessarily line up with the purveyors of this particular behavioral inventory.

March 29, 2017

We've met before.

Today at Support for Special Needs:
Excerpt: 
Those of us raising our kids in public school environments have a pretty good idea of what de minimis really looked like in its worst case scenarios. We’ve subsisted on the scraps that fall from the educational table. For the Supreme Court to now compel public schools to give our kids the opportunity to make meaningful, substantial and “appropriately ambitious” progress? That has to potential to change our lives and the futures of our kids. We’ll deal with the private school tuition issue later. (Private schools mostly don’t want our kids anyway. That’s a very ugly truth.)

February 23, 2017

The Persistence of Little Fish

Today at Support for Special Needs:
Excerpt: 
When I wrote about the little fish that quietly eat our kids up while we’re busy watching for sharks, I had no idea how many little fish were going to spawn in the coming years, or how sharp their teeth would become.

January 25, 2017

This is why.

Today at Support for Special Needs:
Excerpt: 
Schuyler was surrounded and engulfed and protected by a sea of women, and she understood, I think maybe for the first time, just how large her tribe could be. As she grows older, Schuyler's people becomes a more inclusive group, more intersectional. She took a big step at the march. Her disability advocacy took on more feminism that she'd felt or shown before. Her world grew bigger, and with it her protest and her advocacy.

January 19, 2017

Exploring Worlds Both Dark and Lovely

Today at Support for Special Needs:
Excerpt: 
In taking my own focus inward to her more immediate world and trying to help as best I can, I feel like maybe I can recapture my own sense of autonomous self. I can't solve the Big Thing, but I can tell her what it was like when I was seventeen and trying to figure out if love was a thing for me. I can tell her what I got wrong, which weirdly seems to give her comfort. I have value as a cautionary tale, I suppose, which is true of my adult, parenting self as well. So many times, I feel like my fatherly approach to the walls that stand in her way is to keep smashing my face into them over and over until I find a brick that's loose.

January 12, 2017

Denial

Today at Support for Special Needs:
Excerpt: 
There are two kinds of deniers. There are the kind that are just goofy, like moon landing deniers. They're not hurting anyone, they're just being kooks, God bless 'em. And then there's the other kind. September 11th was an inside job, they say. Sandy Hook was a hoax. The Holocaust never happened. Donald Trump wasn't mocking people with disabilities. These deniers aren't just trying to change the narrative to fit whatever their ideology might be. They are erasing people, they are taking the struggles and the particulars of the lives of vulnerable people or people who have been destroyed by the world and they're simply sweeping it away, as if it had never happened. If there's pain there, from the agony of a family wiped out by a hateful ideology or an act of violence to the heartbreak of a parent watching the future president turn their children into a joke and an insult, well, that pain is wiped away with simply denial. Didn't happen. The media lied. You're being too sensitive. You're being politically correct.

December 28, 2016

"At least I think that's so..."

Today at Support for Special Needs:
Excerpt:  
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.

December 16, 2016

The Value of Protest

Today at Support for Special Needs:
Excerpt:  
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.

November 17, 2016

The next day, and the next

Today at Support for Special Needs:
Excerpt: 
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.

November 9, 2016

The New Danger of Difference

Today at Support for Special Needs:
Excerpt: 
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.

November 2, 2016

A Simpler World

Today at Support for Special Needs:
Excerpt:  
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.

October 5, 2016

Small expeditions

Today at Support for Special Needs:
Excerpt: 
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.

September 21, 2016

Check your local listings, and hold your breath

Today at Support for Special Needs:
Excerpt: 
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.)

September 14, 2016

Toll

Today at Support for Special Needs:
Excerpt: 
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.

August 30, 2016

The invisible monsters who walk among us

Today at Support for Special Needs:
Excerpt:  
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.

August 4, 2016

Shouting Over the Walls

Today at Support for Special Needs:
Excerpt:  
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.  

July 27, 2016

The Disposable and the Unseen

This morning at Support for Special Needs:
Excerpt:  
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.

July 12, 2016

The Watcher

This morning at Support for Special Needs:
Excerpt:  
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.

July 5, 2016

Precarious Indifference

Today at Support for Special Needs:
Excerpt: 
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.

May 10, 2016

With Thoughts of Other, Younger Days

Today, at Support for Special Needs:
 Excerpt: 
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.