August 31, 2011

Push and pull

"Have you ever found a term for our super kids that doesn't piss you off Robert? Since there are times when we need to call them what they are (Special needs, Differently-abled, handicapped, whatever)."

It was a fair enough question, although it started from a false premise. I don't believe I've ever stated that I "hated" any identifying terminology, aside from the word "retard", and I hardly think that's exactly crossing the line into oversensitivity. The above comment was made in response to a joke I'd made about the term "differently abled". Most of us who spend time in some way in the world of disability tend to engage in a little dark humor; some very pointedly do NOT. I made a joke about "differently abled", the same one I've made before about how it sounds to me like we're describing toddler superheroes ("I can fly!"), and it pushed someone's buttons.

Which is fine.

It's fine because we're not all the same, we're not even close. We call ourselves a community, but as I've pointed out before, we don't actually agree on all that much. We don't agree on terminology. We don't agree on whether special needs kids are better off in segregated special education classes or in total inclusion, or something in between. We don't agree on cochlear implants or vaccines. We don't agree on whether kids with developmental disabilities need as much help as they can get in order to try to make it independently, or if they're fine just the way they are, or if they're fine just the way they are and yet should somehow be able to live independently in this rough world. We don't even agree on who gets to claim membership in this "community".

So no, we don't agree on much, and again that's fine, because all of our worlds are profoundly far apart. Creating a real community with common goals might just be too much to expect. I can see that now.

As a neurotypical parent, there's only so much that I can expect to understand about Schuyler's internal world. That is equally true, however, of even the world's most experienced educators or the most brilliant doctors and therapists, and it's true of observers with chronic conditions and of self-advocating persons with unrelated disabilities like autism. It's particularly true of those who have never met her, but it's often true of family members, too. Schuyler's inscrutability is true of those passing-through people who meet her once or twice, whether they realize it or not, and of all but a very few close friends (and they know who they are, I hope). Perhaps other kids with bilateral perisylvian polymicrogyria might have some insights, but, if you'll excuse the phrase, most of them aren't talking. And even if they were, fancy medical types who Know Such Things have declared that Schuyler's particular manifestation of BPP is very likely unique.

So perhaps she is ultimately unknowable, but Julie and I don't accept that, and shame on us if we ever did.

It's a foggy world, and we try to enforce some kind of order on it, because one of the more disquieting aspects of disability is the chaos, the unknown. Kids like Schuyler experience the world very differently from neurotypical children. Sometimes they are unaware of this difference, but others know it. They know it, and like Schuyler, some of them push back against it and try to fit in, try to pass even as we try to convince her that she doesn't need to. Well, try to convince ANY eleven year-old girl that she doesn't need to fit in with her middle school classmates and see how far you get. But other kids who understand that they are different, some of them similar to Schuyler and others with disabilities but entirely UNlike her, they reject the impulse to fit in. Some don't even feel that impulse at all.

Parents of kids like Schuyler also live in a world of chaos. We struggle with the push and pull. We're responsible for our children and yet we're making up the rules as we go along, rules which disintegrate like cigarette ash when circumstances dictate. As I said recently, we stand astride two worlds, that of the neurotypical (which we try but fail to educate about our kids) and of the disabled (which we can try to understand ourselves but can only do so from outside, as the most interested of all interested parties). And our dirty secret is that in standing with a foot in each of those worlds, we don't actually fit into either of them very well. As time goes on, we fit less and less, not more. But through entering into authentic relationships with our broken children, we do achieve a kind of understanding, and we are enriched and enlightened by the experience, so in the end, we are richer for it. It's a tough life, but we're privileged to be a part of it. Sometimes we find a little peace.

I know, by the way, that I lost a few of you there when I said "broken". And once again, that's fine. Of all the terms I have used over the years, that's the one that has earned the most comments. But here's the thing. Those comments have always, ALWAYS, been pretty evenly split between Team "How Dare You" and Team "That's It Exactly". More importantly to me, I've heard from quite a few members of Team "'Broken' Is How I Self-Identify". So I keep using it, because it describes what I see and experience with Schuyler, in a way that holds equal measures of pragmatism and hope. If Schuyler ever asks me not to use it, I'll stop.

More and more frequently, I find that our fragmented and underpowered community trips itself up on terminology. We establish the words that work for us, we insist that others use our language, and we fly our Flag of Offense when we are denied. I guess that applies to the whole "R Word" debate in some ways, although I still feel that if you are adamantly defending your use of a word that is so widely accepted as derogatory and which makes persons with developmental disabilities into the defenseless butt of your ugly humor, you're probably not so much a Warrior for Free Speech. You might just be an asshole, and probably need to come to terms with that.

Having said that, I have a confession to make. I kind of wish I'd never written about the "R Word". I sometimes wish I'd obeyed the little voice that whispered in my ear that it wasn't a place I wanted to go. Not because I don't believe in the cause, because I do, very much. But I never wanted to get branded as someone who thought a word should be "banned", or that every time it was uttered by a dumb teenager or an entitled hipster or a sports figure tragically planted in front of a microphone, I would be expected to raise that Flag of Offense and charge into the fray. I just wanted people to understand the word they were wielding and exactly how many people were hurt when they used it, even as my own understanding of its power was limited to my own experience as a parent and someone who loves Schuyler ferociously. It's a battle worth waging, but I'm not sure I was ever the right person to take up the cause. I don't know. I'm sorry I did, but I'm glad I did, too.

Not every squabble over terminology is so clear cut as "Don't call people retards, seriously." There are many ways to approach the issue of word usage, I suppose. We could insist on the use of People First Language, for example, but despite what you may hear or read (and GOD, you will read the claim if you consult Dr. Google even a little), People First is NOT universally accepted. I've written about my own negative feelings concerning People First, and there are others who have written at length, including many persons with disabilities. People First Language is a well-intended concept, and it works for a lot of folks, but where I believe it fails is in its insistence on universality.

Truth is, there is no universal perspective on disability. We can't even agree on what to call our kids. The special Toys-R-Us catalogue that I was discussing when that earlier comment was made referred to our kids as "differently abled". And if that works for you, that's fine. (How many times have I said "that's fine" already?) I don't feel like Schuyler is differently abled, though. She doesn't have abilities that are different from anyone else's, not exactly. She uses a speech device and employs some sign language as needed, but they're not inherent abilities that have organically grown out of her disability. Those are skills she's picked up by necessity, and she's not much of a prodigy at any of them. She uses them well enough to suit her needs, and that's enough. Her abilities are purely human, and some of them are broken. She can't talk, much less fly. But she can communicate, and she works harder at it than I do. Or you, for that matter.

She's not differently abled, but she does do things very differently, and that's what ought to be celebrated. Schuyler began with no verbal communication, so she developed her own manner of expressing herself, and that manner is extremely physical. Schuyler doesn't speak like you or me, but she communicates in her own perfectly Schuyler way. She verbalizes as effectively as she can, and sometimes it's not bad at all. But she also touches, she mimes, she hugs and hangs onto her loved ones. She invades the "personal bubble" of her classmates, much to their consternation, which is an issue we're working on. It's hard, though. Schuyler tugs at you insistently when she wants to show you something. Perhaps if she had the voice, she would just tell you about it instead. But most times, I'm happier to have her pull me, show me, to express her love and her happiness with hugs and kisses and imploring looks and flappy hands and her goofy laugh. Most times, I think maybe words alone would be boring.

Is Schuyler "differently abled"? Is she "disabled"? The hated-by-all but used-by-all "special needs"? "Broken"? "Neurodiverse"? Does it make a difference what she is? Do the inadequate words we choose really matter all that much as we try to grasp the imperfections that make up our loved ones, or our very selves? Yes they do, and no they don't. And we have to find a way to be okay with that.

As for Schuyler, I might just be wrong. She CAN fly.

August 27, 2011

Hamster Science

Describe the differences between a transverse wave and a longitudinal wave.

If our Sun were a high mass star, what would be the eventual outcome of its life cycle?

Essay question: What would happen to our body's absorption rate of the intestines if villi had no microvilli?

There are a lot of things in this world that I do not know for sure. I'd say that most items fall under that category. So here are a few of those many things that I do not know for certain.

I can't say whether or not any of the above topics, which came home in Schuyler's classroom notes this week, would be within her grasp if she'd had a better mainstream classroom experience in the past, particularly last year. I can't claim that her mysterious and troubled brain would have the capacity to make sense of the material that she is now being handed in middle school if things had gone differently in her last few years in elementary school. And I can't say with any degree of certainty if things would be any different for her if the school district diagnostician hadn't informed her entire IEP committee two years ago that she wanted to retest Schuyler's IQ in order to have her labeled as MR, the range that she anticipated as the result of that test. I certainly can't state definitively that just making that observation subsequently informed, however subliminally, the way Schuyler was taught after that meeting.

What I can say for certain is that Schuyler's position in her mainstream class last year appears to have been akin to that of the classroom hamster. She was cute, she was friendly, she was tidy and she was helpful to the teacher. Remember, that was the extent of that teacher's evaluation of Schuyler's academic progress at her IEP last spring. Nothing about how Schuyler performed academically, and certainly not a word about strategies for teaching her. I don't know if there even were any strategies in place. If so, they appeared to be a trade secret.

And you know me. I love hamsters. I just sort of thought I was done raising them.

So that's the bad news. Here's the good news. Schuyler has all new teachers now. None of them were there two years ago when the diagnostician came right out and said that she believed Schuyler fell within the MR range and planted that seed. They'll find out soon enough that Schuyler isn't going to wax philosophical on transverse waves any time soon, but they won't have the whisper of "Don't bother, she'll never be able to do that" in their ears. And she has a special education team leader who appears to believe in Schuyler and whom I believe will advocate aggressively for her.

I don't know much about the outcome of the Sun's life cycle, either. I'm more concerned about the life cycle of my daughter. Its quantity, and most of all its quality.

August 25, 2011

Just a Word: Smarty-Pants Edition

The National Society of Collegiate Scholars has teamed up with Special Olympics for a new public service announcement. The NSCS provides scholarships to students who are in the top twenty percent of their class. They have more than 700,000 members from over 270 colleges in all fifty states and Puerto Rico (you lovely island).

The take-away message might be "Smarty-pants people don't say 'retard'. So don't you do it, either." I can get behind that message.

August 22, 2011

Independence Day

Okay, so I'm breathing again after a somewhat anxious day.

Schuyler survived her first day of middle school.

She seems to have done more than survive, really. She apparently had a great day. She jumped off the bus in a great mood, and was telling me about what they did in her band class before we even got the door open. She said she had a little trouble with her locker and needed some help, but she'll get it. She's already opened it a few times all on her own, after all, and she doesn't like to lose. Her lunch bag still contained the food she was too excited to eat at lunch, including her chocolate pudding, people. Chocolate pudding. She left pretty much everything at school that she was supposed to bring home, except Pinkessa, but otherwise she seems to have nailed all the big stuff. When I asked her how she did, she said "I listened to my teachers very carefully." She is trying very hard to get this right.

We've had a lot of anxiety about Schuyler going to middle school. The truth is that she's eleven years old, but she presents much younger. Schuyler has a developmental delay, but that doesn't tell her whole story. It's hard enough to track her intellectual growth, but Schuyler is also emotionally... naive is perhaps the best word. She's very sensitive and wants to help, to the point that she often invades personal space. She tends to play with kids a few years younger than she is, which worked out well enough in elementary school, but in middle school, she's among the youngest.

But it's not that simple, either. Schuyler is also very adaptable. We saw it last week at the school's open house. Schuyler is extremely sensitive to the behavior of those around her, and when she found herself surrounded by kids older and more mature than herself, she stepped up and she worked to fit in. I believe that's probably what she did today, too. Middle school might kick her ass a little, but it may just finally provide the incentive to grow up a little, too. Not too much, I hope.

There's an undeniable truth about Schuyler. She is mostly uninterested in embracing a world of neurodiversity. She wants to be like everyone else, and while we try harder than anyone really knows to celebrate who she is on her own terms, Schuyler works hard to walk unimpeded in a neurotypical world. She understands that she's different -- she's said as much -- but she also knows that she can pass for typical. I've written about the unique challenges of invisible disabilities, but Schuyler wouldn't have it any other way. I don't know how much success she'll have, and I suppose on some level she may be doomed to fail, but if anyone can do it, if any kid with a developmental disability can make her way through our world, it may very well be Schuyler.

At the open house, I watched her find friends and make a few new ones. I watched her as she puzzled out her locker, and I saw how she mapped out her classrooms. She memorized all the numbers she needed, and she did so without one bit of help. When confronted with a world of kids who are older and more independent than herself, Schuyler stepped up. I think she might just continue to do so.

Those of you who have been reading me for a while, particularly those who have read my book, you understand exactly how much it means to Julie and myself that Schuyler might one day be able to live independently. Entirely independently, too, self-supporting and on her own terms. Middle school is going to be a big part of that for her. She's got accommodations in place to help her. She's got assistants in most of her classes, except for PE and band, and she's got her medic-alert tag and a luggage tag on the little backpack that she uses to carry Pinkessa, so she can quickly tell people what they need to know. She's getting help.

But at the end of the school day, she gets on a bus and comes home. She'll have a key to let herself in if she needs to. As far as anyone who's casually watching knows, Schuyler will be the thing she dreams of being the most. She'll be just another kid.

August 20, 2011

Schuyler answers

Okay, so she didn't answer every question that was sent to her; she sort of ran out of gas, attention span-wise. But I think she got the bulk of them.

For those of you interested in how this worked exactly, I asked Schuyler the questions and she answered them directly. I only assisted her with grammar when she asked for help, and then I would point out what she got wrong and let her figure out how to fix it.  (When there are caps or exclamation points, those were very specifically dictated by Schuyler. She can be particular.) She mostly used her speech device (which she calls Pinkessa), but also answered verbally when she could and used sign language very occasionally. This is how communication with Schuyler works; using just one method would be very strange for her.

When couldn't entirely put something into words accurately, she was able to mime it out for me so I understood. Once again, she illustrates both the frustration and the weird beauty of how she communicates. It takes some work to learn Schuylerese, but it can be pure poetry when you get it.

How did you finally manage with your locker at your new school?

It's hard, but I can do it now. I like my new school and my new teachers and my new friends. We are the purple hogs!!!

Rate your dad's current facial hair on a scale of "awesome" to "embarrassing".

I liked it a lot. Daddy looked like Santa Claus.

Schuyler what would be your idea of a perfect day?

I like to go swimming with my dad and mom.

What do you like most about your dad? What is your favorite movie?

I liked the mustache. Daddy is so funny. King Kong, Coraline, The Iron Giant.

What are you most looking forward to about school this year?

I like to play the big drums. I want to make new friends.

If Godzilla and King Kong had a fight who do you think would win?

Godzilla. He has things on his back and shoots fire.

If you were going to make a movie, what would it be about?

I would make a movie about mermaids who have powers.

What is your favorite song and why?

Lady Gaga, Telephone. I like it A LOT!!!

Do you think of yourself as different? And what makes you different?

Pinkessa is different and I am too. I can't talk.

What is the one thing you want everyone to know about kids who may be different?

We like to play and have fun. We don't like pointing and mean people.

So what is Rob REALLLLLY like?

He is funny like a clown!!!!

What is the funniest thing your dad ever did?

He said I had a tail.

Have your parents signed you up for Girl Scouts yet?

No. I want to go. I want to camping and sell cookies.

I'm just slightly older then you and i think you are fantastic!!! What do you want to be when you get older?

I want to help sick people and also I want to be a police woman.

Hi Schuyler-what are some things that make you happy?

Daddy and Mommy and Maxie and Lulu and Petey and my mice and Squinkees and LaLa Loopsies. And that's it!

Do you like it when your parents help people understand what you're saying or try to explain what you're thinking? Or is it annoying sometimes?

Yes, I can't talk and Daddy and Mommy know what I saying.

Do you feel like a special, famous kind of person, being the subject of a book and a blog? Or do you just kind of ignore that?

I don't care!!!!!

I'd like to ask if she's offended by the word "retard" when it's used by people to make a joke or poke someone else. Also, I'd like to know if she thinks Justin Bieber is a tool.

I don't like that word AT ALL!!!! It is a bad word! I don't like him at all!! He's not my boyfriend!!

You've got a wonderful fashion sense, and I would like to know - what are a couple of things that you are excited to wear to school? Do you like tights and tennis shoes or boots? Do you prefer skirts or pants?

I like skirts and dresses earrings and I want some new boots. I want purple hair again.

Tell me about the your biggest accomplishment so far. What do you want to be when you grow up?

I flew an airplane. I want to be a pilot.

Schuyler - tell us something your daddy does that is super GROSS!!!!!

He farts! (Note: She's a hypocrite...)

Schuyler, if you could do anything in the world, what would you choose to do?

Have fun with my dad and my mom.

Ninja, pirate or dinosaur?

Dinosaurs are my favorite.

What's your favorite nickname?

Daddy calls me Schuyler Bear and I like that. I don't like Chickenhead Jones!

If Schuyler could have any super power, what would it be?

I would be a water bender. (Note: That's a reference to the Avater/Last Airbender tv series.)

Airbending Schuyler art by Crystal

If you could have any three pets, what would they be?

A cat, a turtle, and a bird.

Are you dressing up for Halloween? What is your costume going to be?

Medusa! We are making a snake hat!!!

Do you think you'll ever have your own blog? If so, what would you write about?

I will write about swimming and flying airplanes and school and band and my friends and Daddy and Mommy.

Do you like video games? Which ones? I like Nintendo and really old games.

I like Sports Resort and Mariokarts!!!!

Hi Schuyler! My son, Ethan, is 6 and has a Vantage Lite like yours. He picked black, though. We are having trouble figuring out what to call it. Do you have any ideas?

You can name it Max. Max is a name for a boy.

Do the kids at school ever pick on you? If so, why do you think they pick on you and how do you answer them?

Yes. They're mean and not friends!!!! I tell them I don't care!!!

I visited Plano last summer and I got super excited when I saw the Purple Cow, because I remembered it from this blog. I didn't get to try it though :( When I visit Plano again, what's the best thing to get at the Purple Cow?

I like to eat mint chocolate chip ice cream!!!!

Hi Schuyler! What's your favourite story?

My favorite book is Don't Kiss the Frog!!

If you could either fly or be invisible which would you be and why?

I want to be invisible and I don't want bad guys get me.

Hi Schuyler- You might remember us from the Apraxia Walk-a-thon in 2009. You walked and played with my daughter Ava. She is 5 yrs old now and she is getting the same Big Box of Words as you have. Here's my questions:

1. Was it hard for you to learn how to use it?

No, it is so easy! Mrs. Williams helped me to learn Pinkessa.

2. Do you like using it, or do you like signing better?

I like Pinkessa better.

3. When other people ask why you can't talk, what do you wish you could say?

My brain won't let me talk. I have Pinkessa to help me talk.

What is the toughest thing about not being able to talk? Do you ever wish you could just tell people what you think?

It's hard when people ask me questions. Yes.

Hi Schuyler! I am a future speech language pathologist and wanted to ask about Pinkessa :)

When do you use it most?

At my school.

How would you change it so that works best for you?

Make it give me a voice.

(Note: She had a hard time with this one, not because she didn't have an answer but because she didn't know how to put it in words. This is a case where being with her in person helps. She indicated with her hands that when she says she wants it to give her a voice, she means that literally. She wants the device to enable her to physically speak for herself with her own physical voice. I never knew that until now.)

What do your parents do that embarrass you?

Daddy calls me Chickenhead Jones!! Mommy poots!!

August 17, 2011

Ask Schuyler

I got involved in a discussion on another site concerning self-advocacy versus parent advocacy that was interesting for about an hour before we all became angry and entrenched.  Well, what are you going to do?

Anyway, as a result of that discussion and its spinoffs on Twitter and Facebook, I asked Schuyler if she would like to actually say something herself.  She didn't have anything she particularly wanted to express, but when I asked her if she'd be willing to answer questions that other people submitted, she was in.

I've already gotten a few on Twitter, and I think she's going to begin answering those after her lunch date with Chef Boyardee is over.  But if you would like to ask Schuyler something you can do it in the comments, on Twitter or Facebook.  Or email me if that's how you roll.  I'll post her answers tomorrow.

Update: Well, "tomorrow" is going to probably end up meaning "Saturday". Apologies, but we got busy with life. I'm kind of okay when that happens. Anyway, Saturday looks like a good day for questions. See you then.

August 16, 2011

The Calculus of Overbelieving

So there we were, the three of us, in Target with the school supply list from Schuyler's new middle school.  There weren't any particularly horrific items listed (no $1300 marimbas, for example), but one item gave us pause.

The scientific calculator.

It wasn't terribly expensive -- about ten bucks -- but we have a pretty good idea of what Schuyler is capable mathwise.  We also knew that Pinkessa, her speech device, has a scientific calculator on it.  We had a pretty realistic sense of how frequently this ten dollar scientific calculator was likely to ever be used.

And we bought it anyway.

In the end, it was an easy choice, once we talked through it a bit.  We'll burn ten dollars rather than try to reconcile being the parents who decided that our daughter will never be capable of using the same calculator as her classmates.  We'll spend that money that we could certainly use elsewhere so that Schuyler has the same calculator as everyone else, rather than the one on her speech prosthesis, the device that gives her a measure of expressive freedom but also reminds the world "I'm broken."

Sometimes overbelieving means spending money for a principle, one that says Schuyler should start off the year with the same tools and the same possibilities as everyone else.  It's the same reason we politely declined the school's offer to give her a special locker without a lock on it, despite the trouble she had with the one that was assigned to her when we tried it at orientation.

She begins middle school next week, and I'm terrified for her.  I have less faith in the decisions we've made for her that led up to this point than ever before.  The fact that I'm even writing about this might be a good indication that I'm overthinking as well as overbelieving.

Well, anyway, there it is.  Schuyler has a calculator now, one that those of us who know her best can scarcely imagine her using.  But it'll be there, sitting in her bitch of a locker, if she needs it.  We can do that much for her.

Also, she found a pink one.  Well, of course she did.

August 15, 2011

More in common

Image courtesy of Support for Special Needs

As I mentioned last week, I was privileged to speak to the BlogHer '11 Special Needs Mini-Conference in San Diego. If you'd like to read what others have to say about it, there's a page at Support for Special Needs where a number of blogs are listed. I'll keep my own comments brief since I was a participant and probably ought to keep the "Gosh, I was swell!" remarks to a minimum.

(Incidentally, there's also a transcript of sorts, but be warned: it reads VERY oddly, like something translated into another language -- Martian, perhaps -- and then back into English. I sound as if I suffered a head injury shortly before the panel. To the best of my recollection, I did not.)

I will say that my fellow panelists, Aurelia Cotta and Shannon des Roches Rosa were amazing. Both were poignant and intelligent, and happily made it a bit more difficult for me to speak intelligently. (If Aurelia was the heart of the panel and Shannon the brains, I guess I was the mouth. This will come as a tremendous surprise to exactly no one.) I keep hearing rumors of a soon-to-be available podcast, which I will post if such an animal actually steps out of the woods in the near future.

These kinds of conferences serve as important sources of information, as I've learned over the past few years. And this one was no exception. But I think the real value of the Mini-Con, especially for someone who has never attended a gathering like this, can best be measured in the unexpected sense of community they find. There really is strength in numbers, but only if you have a real understanding of exactly how many people are in the same boat with you. The crushing sense of isolation represents an almost universal experience for special needs families, and it really can be the thing that ultimately destroys our spirits. Something like the Mini-Conference gives us all a chance to share experiences and stories. On a visceral level, it gives us the chance to simply occupy the same space, to breathe the same air as others who well and truly get it. It's impossible to quantify just how powerful that experience can be, and how deeply it can change how we approach our lives and the lives of our kids and loved ones.

Advocacy begins in places like this. Disability advocacy in particular starts small, in communities based on specific diagnoses. Those communities grow, but not equally, and even the larger one are, by their very specificity, limited in what they can accomplish. I have stated, both here and in public appearances, that I believe the fight for disability rights, particularly in the hearts and souls of our typical fellow citizens, will constitute the next great civil rights movement in this country. And I believe that, with all my heart. But for that to happen, all of our little communities of need will have to become a unified group. We must embrace the idea that the rising tide really can lift all our boats. More to the point, the retreating tide can and very probably will leave us all stranded in the mud.

In looking for a way to create this unity, it makes sense to look for organizations who are already in place and already have a structure and a reach that can be utilized. Special Olympics has that structure, but I'm not sure they are a good match for the strong, entitled and impolite brand of advocacy that I believe will be necessary. Special Olympics focuses on a very specific and very positive message, and I doubt they want to stray very far from that. Which makes sense, honestly.

I think BlogHer might be a better fit, honestly, and I sincerely hope they are willing to keep moving forward with us. They provide an excellent and extremely high-profile platform for our advocacy, and I think we grant them a measure of depth and gravitas that serves them well. I am hopeful that a meaningful partnership will continue to build with BlogHer.

A hashtag grew out of the post-BlogHer discussions: #moreincommon. It also serves as a mantra for Support for Special Needs, the idea that as persons with disabilities and their families, caregivers and advocates, we have more in common with each other than that which separates us. I am obviously on board with that concept.

But I'm going to suggest that the real commonality isn't between all the different flavors of our very diverse disability community. It's between us and YOU. Those of you from typical families, those for whom all of this might feel like someone else's struggle, you are part of this, too. You simply must be. Our kids, our families, they need you to be. For an authentic sea change to occur in our society about how disabilities are perceived and how our children's humanity is recognized, you have to be on board.

And here's the thing. You WANT to be. This cause is on the right side of history. You want to be on the side that is marching on behalf of these folks, voicing the advocacy that so many of them are unable to voice for themselves. You don't want to find yourself, through apathy or outright opposition, with the modern-day equivalent of the mob with the water hoses and the bitey dogs and the clenched fists, shouting "No, you're a burden on us. Go back to the shadows." And we don't just want you there with us. We need you. This is your call to arms, too.

Entering into authentic relationships with those of your fellow citizens who seem to be the least reachable and who maybe even challenge your own feelings about what it means to be human, that's an opportunity to grow that you can't afford to walk away from. Our kids have a lot to gain by your participation, but if you are willing to really explore the things we all have in common, I promise that ultimately, you will have benefitted the most.

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.

August 8, 2011

In the Company of Women

(written on the flight home from BlogHer '11 in San Diego)

The sun is setting over the Pacific as my plane takes off for home. For the past four days, I haven't hated that sun. The San Diego sun has been pleasant, after all. The Texas sun that I'll see again tomorrow? It wants to kill us all. And it might just succeed.

I'm not going to write about the Special Needs Mini-Conference itself just yet. Those of us who participated in the panel and those who attended have been asked to post something next week, on the 15th, so I'll gather my thoughts and post a more comprehensive something something then.

But I did want to say a few words about the women I met at the conference. Given that it was BlogHer, it was almost entirely women I met, after all. (I walked into the conference center's men's room on several occasions and had it all to my princely self.) There were a few educators at the conference, but mostly, I met mothers.

I met extraordinary mothers.

I see how hard Julie works for Schuyler; I know as well as anyone the rocky pathways these mothers tread. As I met them and heard their stories, I found once again that some of them face monsters that make Schuyler's look like Cookie Monster. I met mothers who face daunting obstacles, mothers who spend their waking hours tending to and sustaining and comforting their beautiful, broken children. Some of them do this work alone, far too many of them, I suspect. I met mothers who have no time, and yet make time, mothers who struggle not just to save their children, but also to hang onto their own humanity, their own sense of self. I met mothers fighting to avoid being swallowed by their children's monsters.

These mothers have every right to be tired, to be ragged and sad and bitter. They've earned that right with their tireless advocacy and their unending work. They fear the future like I do, and that fear can be consuming as well. These mothers have a right to lose their faith.

But here's the thing. I didn't meet ragged, defeated mothers. I met strong women, charming and funny and positive, mothers who recognize not just the extraordinary challenges that their children present, but the enriched lives and unshakable loves that they enjoy for having those kids in their worlds. I spent the day of the conference with a continuous lump in my throat, listening to their stories and their hope and their unflagging overbelief in their kids.

If I were to try to list everyone I met, I would leave someone off and that would be wildly unfair. I do want to recognize my extraordinary fellow panelists, Shannon des Roches Rosa and Aurelia Cotta, as well as Julia "Not that Julia Roberts" Roberts from Support for Special Needs, who organized the event and ran it like Swiss clockwork. Thanks also to the unstoppable Jen Lee Reeves for all your help and amazing energy.

Mostly, I want to thank everyone I met and everyone who attended the session. I felt like something real got started, something significant set in motion. For myself, I can only say that I feel inspired to do better, to be a better parent and a stronger advocate. And that's probably the very best I could ever hope for.

August 1, 2011

Monster Day

Eight years ago, a question turned into an answer. Hope turned to fear, and took a few more years to tentatively turn back into hope. Eight years ago, on a sunny day in New Haven, Connecticut, we were handed the rest of our lives. Eight years ago, the worst and best days of our lives began in earnest.

Eight years ago, Schuyler was diagnosed with Bilateral Perisylvian Polymicrogyria.

Happy birthday, monster. You are still a motherfucker.