August 26, 2007

Pragmatic monsters


Schuyler works the clay
Originally uploaded by Citizen Rob.
I received an email the other day, a very polite and warm email, to be honest, and like many others, it took issue with my use of the word "broken" in reference to Schuyler. There were a few new twists to the objections this time, which made me sit down and actually think about my take on this issue.

It's a divisive issue, and one I obviously feel strongly about. It's been the cause of many arguments and has damaged at least one friendship, I suspect beyond repair. I've been asked "How can I suggest that Schuyler is broken?" and told that it is appalling that I could believe anything other than she is okay just the way she is.

How do I explain that I find it even more appalling that a parent would blindly accept The Way Things Are without taking up that fight? Those are hard conversations to have. They are doubly hard when the person making the argument does so with courtesy and respect.

The person who wrote to me did just that, and the point she made was something of a new one. I do sincerely appreciate the fact that her email made me stop and formulate in words exactly how I feel about this. I won't quote her whole email, but I'm going to take the liberty of just a bit of it. I think this point is important because it touches on a thought that I've even had myself from time to time.

"My mind keeps asking the questions, 'What if these children aren't 'broken'? What if they are made exactly the way they should be? What if they were made that way to be a benefit to people like you and Julie?' You guys HAVE found your own path, and like you say, some days are good and some are bad, but it seems that the overwhelming consensus of both of you is that your lives are better because Schuyler is in it. So, what if God designed her to be the way she is to benefit you?"

That's an inviting thought, actually. I even suggested something similar to an old friend of mine recently along those lines. I said for many who believe in reincarnation, there are those of us who live the lives we live in order to learn things that we need to learn in our ultimate journey, but (they believe) there are also those who are placed here to teach those lessons to us. It's tempting to think of Schuyler that way, almost like a kind of angel sent to guide the rest of us down some path.

Ultimately, however, I have to reject that idea. Whatever effect Schuyler may have on those of us in her life, the fact remains that she exists in her own right and deserves to live the same life and have the same chances to make it in this rough, mean world as any unbroken child. I've often written about Schuyler's ethereal, almost otherworldly manner, but her reality is decidedly unromantic. If God placed Schuyler on this earth to suffer (and make no mistake about it, trying to communicate wordlessly in a world of the speaking is suffering, no matter how brave a face she puts on it) just so the rest of us could benefit, then what intrinsic value does her life really have? Does anyone deserve to exist simply as a tool, even if it is as a tool of God or Fate or Whatever?

"Schuyler isn't 'broken'. She's just different, and different isn't always a bad thing. Actually, in her case, 'different' means SO MUCH more!"

I understand what this person is trying to say, and I know that a lot of you might agree with her. But Schuyler's reality is not so pollyanna.

Schuyler has an indomitable spirit, and I believe she affects change on some level in everyone who meets her. But she's not just different. Sometimes I hate that word, too, the way it tries to simply place her in another category. Holland instead of sunny Italy, marching to a different drummer, whatever. I feel like the message that "different" sends to her is ten times worse than "broken". I think it tells her that her disability isn't responsible for her struggle and her developmental deficiency, but rather her inability to "think outside the box" or whatever. In my mind, "different" minimizes the very real challenge that she faces (even now, without the added delight of the probable seizures that still loom very large in her future). "Different" suggests that her developmental delay, which is still quite significant, is somehow her fault, as if she simply isn't trying hard enough.

It's easy for people looking in on Schuyler to romanticize her condition, and I know I do a fair amount of it myself. (Calling it her "monster", however, is obviously a writing device, a metaphoric representation of a thing that has no discernible form and which does not have a mind or an intent of its own. Just in case you were wondering if I really do think there's a nasty little green monster living inside her head...) But the reality of Schuyler's polymicrogyria is decidedly unromantic. It's a hard truth that she deals with every day, and one that Julie and I fight along with her, with no tender illusions. Schuyler has no use for gentle words to describe her monster, and she's got no time for them, either. You might disagree with me on this, but I think we would be doing her a disservice if we were to sugarcoat her situation or deny the indisputable obstacles that she faces and which she alone can surmount.

I appreciate the writer and all those who have come before her, as well as those who will continue to speak up. I appreciate their love for Schuyler and for my family, and for the positive way they want, they NEED, to see my daughter. But Schuyler lives in a world harder than the one most of us live in, harder and less certain.

Schuyler is not an instrument of God or a guiding angel for all the lost souls around her, not even my most lost of all those souls. She is a broken little girl who works her ass off every day of her life to fix what is broken and work out her own way through a very unromantic and unforgiving world. When, and not if, she makes it, when she carves out a unique and wonderful and, yes, different place for her life, it will happen because of her hard work and her ability to face the monster, unblinkingly, unafraid and with unsentimental clarity.

So that's how I feel about that.

44 comments:

mel from freak parade said...

I can understand your use of the word broken...mainly because of the real physical threat (for lack of a better word) that Schuyler's monster presents to her (seizures being the first thing that come to mind). It is hard to read the stories and see the pictures of Schuyler and see her as anything less than remarkable, beautiful, and amazing...and broken seems so harsh and negative a word....but the reality is, as strong as her mind and spirit may be, in some ways, her body is working against her. Her body is broken. I think using the word broken allows people to see just how strong she has to be to achieve all she does.

Jonah said...

Struggles are very real, but are they necessarily a result of polymicrogyria?
I think that the Deaf community has really tried to challenge that assertion, to say that struggling to speak is certainly not fun, but that the alternative isn't necessarily hearing.
Many Deaf adults would certainly object to calling them or their hearing broken, but they would certainly not deny that many deaf folks do have developmental delays, and that most deaf people face struggles borne of being in the hearing world.

Susan said...

I have always found the word "different" slightly degrading. We tend to call those who are strange, obnoxious, and people who we generally don't want to be around "different".
I think your use of the word "broken" is extremely appropriate.
I believe that to call her "different" is almost to make her a little less human. Whereas "broken" means she's every bit as human as you or I, but unfortunately, parts of her simply don't work right.
Just my two cents on the matter.

Anonymous said...

Dear Rob,

You are so very right to place the blame for the difficulties in Schuyler's life where it belongs. And to not accept for an instant any form of words trying to make that truth less obvious. I'm broken too, less than Schuyler but broken still. And nobody in my life ever acknowledged the fact that I really can't help that. I can still hear them calling at me "you can do it" while I knew I couldn't and tried anyway. And failed, and then blamed myself. "If you try a bit harder.." must be one of the most painfull sentences ever. Follow your instincts, they are spot on.

Becky said...

I have a friend who I introduced to your site awhile back, she has Cerebral Palsy and got REAL offended by you calling your daughter "broken". She fixated on this one word you used and didn't get any farther. It is one of the biggest fights we have ever had and in the end we have agreed to disagree. She thinks you are a real asshole.

I say people are missing the point and Schuyler isn't going to let a word hurt her. You are a great father and a pretty good writer, she would have all the explanation she needed and she will always know what she means to you.

Doris said...

We are all broken in different ways. Some are more apparent to the casual observers, thats all.

Jenni said...

I think we are all broken in some form or fashion and the way we handle that is maybe the only label we really should have. Schuyler has many obstacles everyday and many more to come. If you label her by how she has/is/will handle them, broken is defininitely the wrong word. I also think we are all here to learn and teach. You calling Schuyler broken is opening up a dialouge that maybe needs to be heard. Rambling now....

Linda Ball said...

It's amazing how much ire a word can stir up. Or two. Different. Broken. Our abilities run along a spectrum that is vast. However, most of us fall in the friendly median territory, able to do most things others do, if we try. Then, of course, there are many scales, tracking different abilities. The most ordinary average Joe or Jane is a complex set of scores, this side or that of the median. To acknowledge the source of some of our aberrant scores on certain abilities as parts of us that are broken and can't be themselves changed, reduces their power a little. And invites us to joust with our monsters from other parts of our bodies and beings. These battles go on within us all. And lots of folks are blamed for a lack of will when indeed there is a fracture somewhere and a monster. Discussions like this take us into the dangerous waters of mind/body and religion. And will always be contentious. You have given context to Schuyler's condition in your way and as she is able she can give it her own context. Typing away on her box she can find a way, I hope, to use language as a weapon in her fight. Not every broken (different, disabled, etc.) child has that hope, I guess. I dream it for Schuyler.

Anonymous said...

I only worry about the fact that you call your daughter "broken" because that's how *you* perceive her, or her condition. Children learn who they are by interaction with others, and I hate the thought that she would think of herself as "less than" or "broken" as you call her. It's a negative connotation that focuses on her in her entirety, and not on her disability.

Anita

Hetha said...

You've touched on this with the videos, the fact that sugar coated language doesn't benefit Schuyler whatsoever but just makes other people feel better. I couldn't agree with anonymous more, your instincts are spot on because she's your little girl. When she makes it, it's also going to happen because of the hard work that you and Julie have been doing.

Liana said...

I like what you had written here. It isn't fair to see Schuyler's reason for existence as merely to benefit others (which she certainly does). She is her own person and has to deal with her body firsthand and all the struggles that come with it, regardless of how others see her. I don't agree with people who have commented that you using the word "broken" would hurt her- I doubt she knows and I'm sure you will only explain that to her when she is old enough to understand what you mean. Something in her physical makeup doesn't work right. That she can overcome these difficulties and rise above initial expectations for her doesn't change that fact. "Broken" expresses this well- that something physical is not functioning correctly. Thank you for explaining your use of the word- I admit I didn't quite understand before, and now it makes more sense.

Nicole P said...

Interesting - I have never seen your using the word "broken" as you making a judgement - in my eyes your use of it is more a factual description of Schuyler's state. Something is broken in her. It is so clear to me that although you realize that FACT - you never sell your daughter short - and you recognize all of the things about her that are "perfect" or at least perfectly Schuyler...

From all I've read, it would seem that Schuyler recognizes that parts of her that are broken and is appropriately frustrated by those broken parts. But, more importantly, she seems driven to do her very best- and that comes - at least in part (the part that isn't her natural inclination) - from your and Julie's unwillingness to "sugar coat" things - and to encourage in her independence and strength...

Bizzy said...

Ultimately, it is Rob's choice to find the words to describe his and his daughter's situation. While we are all entitled to our opinions, no one can really know what Rob's and Schuyler's experience is without his sharing. Through language. It seems to me very presumptuous of people to think they somehow have a right to edit these words because of some hang-up of their own attached to a particular word.

Mike Sawin said...

I have to say, Rob: this is one of the most strong, most concise and yet most poignant posts I've read in along time.

Good show!

I know deaf people who feel the way that your emailer does about children who are born deaf: it's not something that needs to be 'fixed', that the kids are fine as they are, that therapy or operations or implants should not be employed on their behalf.

Needless to say, I come down on that issue on the same side you do here.

Amy said...

Living with any kind of disability is a strange balancing act between striving to overcome all the obstacle sthat have been thrown in your path and accepting that those obstacles are never going to go away. It's a matter of accepting that you are, in fact, "broken", but that being broken, and constantly working to overcome your problems, is just part of who you are. Besides, one day Schuyler will be old enough to explain to you what words she would prefer, and until then, no one else's prefernces really matter.

catherine said...

i totally and completely get this post, but i wish i didn't.

i've been told to change my approach for my son, that he will feel "bad" if he knows that i think his syndrome, his collection of diseases and disabilities, is kick your ass, take your breath away hard,

you know what, he already knows it, he has lived it since conception.

i think to minimize the struggle and deny the reality is what would make him feel "bad". that doesn't mean i will lower my expectations at all, i will do everything i can to empower him so that he slays all the monsters he can.

some people are more broken than others. i start by dealing with that and working it as best i can. honestly, i amazed that the species can even go on sometimes.

but then maybe i am a bad person? (i'm pretty sure i'm not).

jennifergg said...

Soon enough, Schuyler will have a say in all this, too. I hope when she does, she chooses not to define herself as broken; that she sees herself instead as loved, and cherished, and supported, which she clearly is.

Anonymous said...

Here's the thing, Rob: I don't see Schuyler being made to feel bad by you using the word "broken" to describe her condition. She knows you and Julie are her biggest fans and best advocates. She knows that everything you do for her is meant with all the amazing amounts of love that you have for her. She may or may not have the words for it on her BBoW, but there's no doubt that she knows it.

And no matter how ethereal and almost otherworldly she may seem, she strikes me as someone who wouldn't have the patience for sugar-coated words. I've never met her. I just know her by your words and pictures, but I can imagine her rolling her eyes at such words, just waiting until the moment she can go play with her dinosaurs and Schleichs again.

Jessamyn said...

I'm thinking, as I'm reading this, that maybe a lot of the issues comes from saying "Schuyler is broken" as opposed to "Schuyler's brain is broken" (or body). I know that I agree that "different" doesn't really work in a situation like this, but it's also true that I hate to think of Schuyler, the whole little girl, as broken. And I do get that her monster is pretty pervasive, so that maybe saying that her brain is broken as opposed to just saying SHE is broken seems like it's purely semantics. But still, since this whole discussion has to do with semantics, I thought I'd throw it in.

britmummybites said...

I remember having a similar discussion with someone via the computer about "words" and as a Brit hated the word "retarded" as it is hardly used nowadays in context of a person disabilites only in a negative way when someone is verbally being abusive to another person. But it's still widely used in different countries.
Everyone has got different views on different words, some words although harmless to them will cause anger in others.

For me, what get's my goat is if someone refers to a child who has speech difficulties as being "LAZY!"

Stephanie said...

As a fellow shepherd, I've had my moments where the "broken" concept bothered the hell out of me, with various thoughts as to why. I do think along the same lines as Mel in some ways: Schuyler has a physical problem; when you look at the images of her brain, you can "tangibly" see it. It isn't a wiring issue; it's something just as present as a green monster, and so "broken" simply feels true.

However, in the case of the high-functioning autistic child (like my own), there is no scan that can be pointed to in order to say, "This, right here, is the source of the problem." In her social interactions, Schuyler is so much more advanced than my son, who is 8; she is aware of how other children behave, treat her, and (BLESS HER) finds her own way to deal with it --- even howling or biting someone is better than not having the awareness that you should have SOME type of reaction should someone hurt or threaten you. Yes, I still remember the insanity that followed that story about Schuyler, the people who turned rabid and violent in reaction, when I all I could feel was ENVY.

My son can be ridiculed repeatedly by people he thinks are his friends and has absolutely no idea, but he wants these friends so badly that he will withhold information from me because, with his almost total lack of social understanding, he thinks I'm trying to get them in trouble. In this (and many other ways), yes, my son is broken.

There have been times that a toy of our son's has been in the wrong place at the wrong time or used in a way that it never should have been (imagine); I'm a freak about those things and try to fix whatever I can, but like probably all parents, we have sometimes used those moments to try to teach our son a lesson about caring for his things, a lesson that is basically, "While I feel sorry for you, it was your responsibility to take care of it. You didn't, and it is now broken, worthless, and needs to be thrown away." I wonder how many children have NOT gone through that lesson. (For anyone who isn't a shepherd, I won't even bother with the psychology of this for the parent of a "broken" child; let your mind run amok, but until you've walked the miles in the Shoes of Guilt....)

With that in mind, though, I can't look at my son's neurotypical friends and ask them to be helpful to my son and/or tolerant of some of his behaviors because he is "broken." They'd never show up again. Hell, he goes to a school specifically for kids with ADHD, HFA, etc., and I've seen those kids occasionally shy away from him like they might get some of his weirdness on them --- and they have no idea that he is broken in ways they aren't (or that they are in ways that he isn't) AND these are kids who are classroom-taught tolerance and respect for each other.

The day is coming, very soon, much sooner than I can imagine being ready for, that I will have to explain to my son that he is not like other kids. I won't be telling him that he is broken or that he is different. For a kid who was born with a "must be good enough" complex (part of his HFA), the best I probably can hope for is to humanize the rest of the planet with their issues and hope he can believe it enough for it to carry some weight.

I do know that I will tell him what I've always told him in trying to teach him empathy and what I tell all children every opportunity I have (especially children dealing with him): Treat others the same way you would want them to treat you. It's the best I can do.

Anonymous said...

Rob,
As a grandmother to a "broken" child, I agree with your rejection of Schuyler being some kind of angel sent to you by a god to somehow make you a better person. That sort of thinking totally negates the real suffering our children face or will have to face in the future. Our sweet grandchild was born with Prader-Willi, a genetic disorder of the 15th chromosone. At the age of almost two she does not know she is different yet, but when I think of the real suffering (unreleting, ever-present hunger) that faces her in the future, I cannot ever see this as a blessing. Not to be dramatic, but I would literally give my life if it would make her "normal". Even though we all love her and enjoy her sweet spirit, there is such a sense of ever-present sadness in all of us. If there is a god and if this was done by him/her to teach us a lesson, I would have nothing but hate in my heart.

Lene Andersen said...

I appreciate you writing in more detail about the thinking behind using the term broken. The first time I saw you use it in reference to Schuyler, I flinched, because if she was broken, then so was I (I've had severe rheumatoid arthritis since I was a child). It's taking the better part of my adult life to finally separate the disease from who I am - it is part of what I am, but who I am is entirely different. Which means, I guess, that I fall in the camp that prefers to say that my immune system is broken, but I am not. But I'm an adult and therefore have had all the negative connotations brainwashed into me - it is clear from your writing that you manage to call it like it is without it in any way interfering with your support of Schuyler being the incredible kid she is, loved to bits exactly because of who she is (if that makes any sense?).

Terminology is funny - I'm not a big fan of different, because that tends to lead to the awful abomination of 'differently abled', which makes me barf every time I hear it. Other people prefer that term and since they are the ones who live in their reality, they get to choose how they speak about themselves, just as I get to jokingly toss about the C-word (cripple).

The email you quoted sounds very respectful, honest and kind (funny thing is, I posted about this the area not too long ago). The problem that I personally have with that argument is that if God made Schuyler to benefit you and Julie, for you to grow and choose the path that you have, it leaves me in the same place I've always been whenever people have spoken to me about god having a purpose for giving me arthritis. Which is the other side of the coin - given how hard and awful a disability is, I feel that it’d be an incredibly sadistic thing to do to a child. Making me a vessel or a motivator for somebody else's personal growth, especially by screwing up my body, doesn't jive with any of the vague and confused impressions I have of a divine energy. Sorry. Rambling. Will stop now.

Penthe said...

The idea of 'broken' is an odd one. There's the sense of having a broken leg. No one would take exception with that, you can see the damage. I don't think anyone would claim that calling the leg 'broken' was somehow denying its value as a leg, or the value of the person with the broken leg.

But there's also the sense of a broken toy (a toy which is used in the 'wrong' way as Stephanie said). This is seen as bad, you throw the toy away. Perhaps the people who see 'broken' as an inappropriate word are looking at it in that sense, that you think Schuyler is worth less because she is broken, rather than that you are observing that she has sustained damage, and must deal with that damage.

My son has damage that we cannot identify or see. Something in the energy making process inside his mitochondria seems to be broken. I don't think I'd ever refer to himself as broken, though. I think I see the results of the damage (clumsiness, fatigue, low muscle tone, etc) as something intrinsic to him, but I generally do not think of him as broken himself.

cathy b said...

I think part of the issue some people have with the word "broken" used to describe a human is a generational thing.

I had never heard the word "broken" used to describe a living thing until my dog tore something in her knee and began limping, and my 20y/o son called her that. It sounded weird to me, because "broken" for me was only something to describe an object, and was a negative word used to implied that the object was no longer good or useful. But my son said it to our dog in such a sweet, gentle way, with such fondness and love, that I learned to hear the word at this "new" meaning. When I read you using it for Schuyler, I had already learned this use--if I hadn't heard it used that way, however, it would have bothered me. I don't know where it comes from, this current use of the word--maybe some movie or song? I'll have to ask my son when he started using it that way, and when he remembers hearing or learning that meaning.

I think that this is where the reaction against the word comes from. Those of us a little older than you might be hearing the word as connoting something lacking in value and ready for the trashbin--an extremely negative thing to describe a person, much less your child, with.

Rob, when did you first hear the word "broken" to be a word that can contain fondness and appreciation? To be a word gentle enough to use for your beautiful daughter?

There is a world view called "Wabi Sabi," in which more beauty is found in something with imperfections than in something cooky-cutter "perfect." I think your use of the word "broken" is a wabi-sabi kind of concept:

From Wikipedia:
"Wabi-sabi (in Kanji: 侘寂) represents a comprehensive Japanese world view or aesthetic centred on the acceptance of transience. The phrase comes from the two words wabi and sabi. The aesthetic is sometimes described as one of beauty that is "imperfect, impermanent, and incomplete""

I love the idea of Wabi-sabi, it explains this weird affection for objects in my life like the one mug with a chip in it or the old cedar chest with the missing caster that was my mother's when she was a girl. My chipped mug is unique from the other matching mugs, and always makes me happy for some reason whenever that one is the one I grab for my morning tea, as if I won some little mug lottery or something.

I do accept this new definition of broken--which can be used to describe people in a way that is loving and respectful--but also understand how it sounds to some people who might not be familiar yet with this usage. Maybe any text using the word "broken" this way needs a tutorial for the fuddy-duddies.

Anonymous said...

Well, just another voice chiming in support of your choice of language. Not that you really need it, but fan mail never goes amiss, does it?

My word is wonky - my brain chemistry is wonky, and that makes my brain do funny things sometimes. Broken's like wonky - descriptive, because there's no point pretending everything is fine.

kris said...

It fascinates me that this conversation comes up again and again. You don't just toss the word "broken" out there recklessly. It is always very clear as to why you use the word broken, so therefore, it's become the natural term for me to see when you are referring to Schuyler and her monster.

Schuyler is heartbreakingly broken. As hard as she works, as stubborn and defiant as she is in the face of her monster, she can never "fix" it. She can figure out how to get around the cracks and the damage, but no matter how hard she works, her brain will still look the same on an MRI. It's awful and sad and unbearable to think about in those terms. Which is why "we're" (all of us who follow Schuyler's story) so lucky that she is spunky and punky and determined. I can't possibly see her as tragic--she won't allow it.

This was a great post, Rob. You hit the nail on the head, so to speak.

s'mee said...

"What's in a name? A rose by any other name will still smell as sweet."

Charming Driver said...

Ugh. I get, certainly, that the e-mailer was well intentioned and genuine but at the end of the day, there is no need for divisiveness in this matter. It's a limited vote situation (Rob, Julie and Schuyler) and the choice of words isn't subject to vetting.

I think I sound harsher than I planned but it really grates me that the focus of Schuyler would be a single descriptive word rather than considering what her actual battle is, daily. Nobody else in the world has to worry about raising Schuyler to function as a non-verbal person in a verbal world more so than you and your wife and there isn't a way to make that a nice, clean pretty pretty image in reality; romanticizing it may make the harder days easier and aide the writing process but it is what it is and Schuyler has to live with that every single day. Calling it something melodic or minimizing it doesn't make her day lighter, why should a choice in words make it easier for someone essentially uneffected by the monster day to day?

Whew. All that to say, this has been an interesting discussion (again, some more, heh). And also, about the whole, ''people are made as they are to change the people around them'' is garbage, pure and unfettered. Children aren't born with jobs or assignments and I refuse to believe that suffering or illness of one is for the betterment of anyone. I want for more eloquent words but all I've got is: Fuck that, yo.

electricboogaloo said...

If kids with disabilities are different and not broken, then why do anything to help them overcome their difference? I was born with brown eyes. That's different than people in my family with blue eyes. No reason for blue contacts, it's just a difference, part of who I am.

But I also have severe myopia. Hey! Why buy glasses? My vision isn't fucked up, it's just a *different* way of seeing.

It surprises me that people who insist that Schuyler's problem is a God-given neutral difference don't have a problem with you giving her a device and working with her to help her overcome her challenges. Isn't that more of a defiance of God's will than simply using a particular word to describe it?

Ellen said...

Your post started an interesting discussion in my house. My older daughter, my "broken" daughter who is very articulate and now in college, says her preferred term for herself is "struggling" but she would quickly and happily choose broken to the condescending and treacly "different" or "special." She says she would rather deal with reality, bold-faced, than deal with the diminished expectations that seem to go with "different" and "special." She also says that the thought of being someone else's angel strikes her as insulting.

Kim said...

All I know is that Schuyler's spirit is not broken, and that's the only thing that matters.

Anonymous said...

My leg is broken. It is a part of my body that doesn't work. It isn't a "different" leg.
You can't please everyone with your choice of words. Someone somewhere will take offence.

Karen said...

I've been reading your blog for years and have never been bothered by your use of that word. I understand perfectly what you are attempting to say to us about your daughter. I think it's strange that others would have a problem with the words you choose to describe your daughter, when the majority of the words you use to describe her are positive, glowing, loving, encouraging and hopeful.

Iselyahna said...

I'm sorry, but I really don't understand why people are so upset about the word broken. "Broken" implies "Can be fixed." Schuyler is fighting like hell to overcome the brokenness. What's so wrong about that?

Anonymous said...

One of the hardest things I ever chose to accept was that my daughter DID inspire me and lead me to growth, BUT that she had made her own covenant with God and the universe for her own growth this go around as well. Even tiny children have agreements with God for their karmic growth.

Happy Mama to Three said...

How many of us carry a hidden "broken" reality? Probably all of us. I carry hereditary angioedema, it's why I have a LifePort, it's why my allergies aren't for Claritin but for IV meds, and ERs and sometimes ICUs and weeks in the hospital. It's a disease so rare at least half of my doctors have no clue what it is when it lands in front of them. I end up being the teacher first, the patient second. I have had 17 abdominal surgeries for a "hidden" bug that almost killed me (necrotizing fasciitis), whose scars hide in my clothes, the pain of which is constant, unrelenting, and silent to the world. Now I live with epilepsy too. The hidden lurker who can take control of every inch of body at any moment. Yes I am "broken". So? And? I am no different from anyone else. I have my challenges that happen to be medical. And yours? Are they perhaps intellectual, social, linguistical, and on and on.... we are each who we are.

Schuyler lives in a world where often a few words must tell a huge story. Why should anyone feel "appalled" that her parents have made things as easy for her and them to understand and deal with as they can? Who am I to say that is why they use "broken?" Who is anyone to criticize the words and emotions and thoughts and rationalizations we each use to live in our reality?

My son has multiple language and speech delays because of his prematurity. That part of him is broken but improving. When we got him started in kindergarten I asked immediately for the speech and language pathologist, I happily signed his IEP making him "different" from his classmates. SO? Because he got extra help in speech and language and reading he is now at the same level as his classmates. Does that make him "fixed"? No, he will always have to work harder than others in some areas, neatness and writing and proper sentence formulation for example will almost always be some level of challenge. So?

I better shut up before this becomes a post. But the best advice I can give anyone who reads a blog and chooses to expond on what someone should or should not do in a situation really needs to walk a mile in the writer's shoes before placing words to paper, because then they will be a mile away from their computer and wearing someone else's shoes. (yes that was sarcasm)

Cindi

Jen said...

I'm a new reader. Thank you for this post. I wanted to chime in here because I'm an adult with a disorder I've lived with most of my life and I use the word broken to explain it to others. For me, it gets across the notion -- one that I do understand can be hard to grasp-- that there's something in my brain that doesn't work right, period, and I need tools to work around it that other people don't need. I've never felt that implies something is wounded in me, or that it somehow excuses me from living, fighting my problem, etc. But broken = doesn't work right, and it's been a very valuable piece of language for me to have. Thank you for opening up your ideas here.

Tammy said...

As a person who has been mostly deaf (I have a small bit of hearing in one ear) since birth, I have always admired how you use the word "broken" in reference to Schuyler. It brings an honesty and a reality to her situation (and yours) that no other word would bring. It is a harsh and brutal truth that your lives are profoundly affected by this "broken" part of her, her brain. When the handle of our coffee cup falls off, we don't say that it is "different" and turn it into a glass (well, some do, I suppose). We glue it together and fix it as best as we can and deal with the bumpy cracks and handle it a bit more gently.

I am somewhat tired of the continual attempts to put a positive spin on the challenges that people face in life. For example the transition from using the word "handicapped" to "disabled" that occurred during the seventies and eighties. I understand the motivation, truly I do, but changing a word does not change the reality of life that "disabled" people face. Or, even worse, calling people "challenged". Being deaf is not a challenge and being brain damaged is not a challenge. Running 26 miles is a challenge.

Along with this, there are all number of platitudes designed to help people feel better about the hand they have been dealt, but sometimes you just need to shake your fist at the sky and have a good scream/cry. What is ultimately the most important thing is picking yourself up, digging in and making it work, and this...*this*, is what you and Julie have done so well. I have been reading your site since Schuyler was about four months old and have watched her grow into a spunky, delightful child that knows how to give the proverbial finger when appropriate and I have no doubt that whatever the future may hold, you will continue to do right by her. And, as parents, sometimes that is all that you can hope for. Keep on keeping on.

debra sanders said...

Wow. Holy Sh**t. Three hours ago I stumbled upon this blogsite completely unexpectedly. Not only have I fallen in love with Schulyer's hair cut, grin and spunk (and boy does she look like mom or what?!?!?); but I have fallen in love with Rob, Julie and all of you!!!!

This has to be the most interesting, respectful discussion over a knee-jerking adjective that I've come across in a very long time. Admittedly I am very new to blogs--in fact I just started my own only last Sunday (mostly because I just HAD to have a place to talk about Sarah Palin); but even without experience out here in this cyberblog world, I suspect this is an unusual site.

Truly, there are dozens of things I would love to chime in about; dozens of comments from all of you that make me want to respond, but I guess that's not what blogging is about! In the words of one of you out there, we best limit our thoughts, lest we wind up with a post rather than a comment!

So, I'll spare everyone and only throw in my two cents about the word broken.

Many of you summed up my own feeling perfectly, which basically is that it is tone and context that assigns that word broken its meaning. Well,tone, context and as was pointed out, the listener's experience with the word itself.

I have met many people whose parents probably never uttered the word broken, yet they grew up feeling useless and damaged--as if they certainly were never worth saving, much less worth being cherished.

And I've met equally as many people who despite limbs that don't work or brains that go whacky or parts that are missing entirely, grew up feeling loved, respected and treasured.

So, that's my take on the word--that its meaning is derived pretty much from the tone and context that surrounds it. And I would say based on my last three plus hours of poking my nose into every aspect of Ro's business that he has made public, that Schuyler Rummel-Hudson has little chance of growing up with her sense of self anything less than rock solid.

True,with each year of school she is likely to encounter more children, more teachers, more strangers that are less than kind. She will have to struggle through a system that is broken to be sure, and that will create angish and frustration for her and her parents, both.

But then, so do most of us and so do most of our children. If not in the special education realm of public education, then on playgrounds, in the classrooms or on the bus.

Seems to me that whether any of us emerge from our childhoods and adolesence with our sense of self intact,has a lot more to do with the foundation we went into those years with, than with what words or tones were tossed out during those years.

I have never met this family...but it sure feels to me like one only has to look through all the photo albums and read years and years of a father's posts to sense that any association this little girl develops with the word broken, is directly related to her frustration with a voice box that is entirely uncooperative.

The only "broken" I have ever encountered where all association is far more painfully sad than painfully frustrating, is when I have encountered a child with a broken spirit.
And while to me those kids are still as precious, just as worthy as any other,to themselves they feel like irrepairable junk that deserves to be put out with the trash.

Now, I might indeed cringe when I think of those broken children..but when I think of Schuyler I just feel bad for her because by the time she gets to be a teenager and interested in boys, her dad is gonna be a major basketcase and she is going to want just a weeeee bit of personal space!!!!!!!

But then, she'll be a pea in a pod right alongside all her teenage friends; so I guess that's a good thing!

Thanks for a great night everybody--and thanks to you Rob for an amazing blog (and book).

I hope I find my way here again!

Debra

ps should any of you want to read about and contribute to discussion about Sarah Palin, please by all means, find me at my blogspace. It's called A Matter of Panache and I think its debrasanders.blogspot.com (but that might not be right!!)

Anonymous said...

I think that you have every right to use the word, "broken." You are not in denial. Denial is a person's worst enemy. I worked with 2 twin boys who have severe Autism and their parents could never come to grips with it. Now I don't think you could ever completely come to grips with it, but at least you should not ignore where your children really stand in this world. Because of the parents' denial, these children have suffered so much! The parents still call them, "high functioning" and believe that they are up to grade level academically and socially with their peers. I fear for their future. Schuyler will have a great future because of you, your wife, and all those who love her. If you want to say,"broken" then props to you!

Anonymous said...

I tend to view things in your light, with the reality of facts, limitations, and set goals. But I also understand those who refuse to label loved ones with such gritty terminology. I used to think it meant those "fuzzy acceptance" people didn't have the fight of those of us on the cold clinical edge. I've found they are often stronger advocates. And disability doesn't fit in semantic spectrums. People who think comparative terms work well with disability may be apt to rank her challenges to theirs (ie the moron of the year who'd line up for measles). Your broken, my exceptional, her different, symptoms can't be swapped by changing terminology. So you own it with your term, but if Schuyler wants to call it something else someday, be read

BCC said...

"So, what if God designed her to be the way she is to benefit you?"

I've got to agree with you that this is theologically f*cked up. So God gave her a disability just to benefit a few other people in her life? No agency here at all? Hell, why not just give her a crown of thorns and cross too and let her suffer for EVERYONE'S sins while she's at it...

Sheri Dyer said...

I can certainly understand your thoughts on some of the hot button words used to describe your daughter. Words have a lot more power than people realize sometimes.
I had to come to terms with my own son and the challenges he faces as an essentially non verbal child with severe autism. Wow... Just describing my son in one sentence, or "categorizing" him carries a lot of weight with it.
Sadly, how I described my son seems to be the most consise and socially appropriate way of referring to what makes my son stand out from other children. For me, it just simply doesn't cut the mustard... Instead, if I have time and someone to listen, I describe my son as Cameron. I am not in denial, or trying to hide his condition, as I have become an outspoken advocate for my son in my panhandle region texas town. I speak out in terms of his specific challenges. I speak out if I feel like my child is being ignored or pushed to the side. I speak out against the subtle bullying and negativity that surrounds us every day.
Sure, my son has been a blessing and has opened my eyes to some of life's smallest details, but I am not about to sit here and worship him. Instead, I take what we as a family have learned and applied it in the most constructive manner the we can come up with.
My child is going to carve out his own path in life. it is my job as a parent to act as his steward, his guardian, and to provide him with encouragment. I will also be my job to let him learn about defeat, and struggle. His path is not well traveled. It will probably have more mountains to climb, steeper terrain, and while some children will have backhoes to carve their tunnels, my son will have a spoon, a chisel, and a hammer.
The Finish line is not always the same, and some chlildren will go through life with parents sweeping the debris away for them, some will be forced to travel the path alone with no help, and others, like my son will have a constant coach by their side until the " coach" dies. For this reason alone, if I had to describe my son in a brief word, the word would be blessed.
So, yes, my son is blessed.... And so is the rest of my family. Personally, I can say that I probably would not have slowed down long enough to see the beauty that can be found in life's details had he not forced me to slow down. I have also become more realistic about that "finish line". While everyone else has a certain goal they wish to achieve with their lives, our goal is to not set limitations on him EVER. The best part of pushing through the anger, doubt, sorrow, or sadness I may feel at any given time is to realize that every day there will be failures and victories. It is HOW you react to the outcomes that determines how you live.
This is simply my perspective on things, and how I cope with our son and his diagnosis.