January 30, 2011

“Is it better to out-monster the monster or to be quietly devoured?”


A monster named Sam.
Originally uploaded by Citizen Rob
I got a reasonable, respectfully worded comment (God, how refreshing) regarding my terminology which I felt deserved an equally reasonable and respectfully response. By the time I was finished, it had gotten far too long for a comment. And while I've written about this before, at length, it's an important point and probably deserves to be revisited from time to time. I felt like it certainly deserved its own post. So here we go...

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"I personally disagree with your use of the term "monster" to describe something that your child cannot separate from herself. This goes against every instinct I have. I am an educator but not a parent.

"I don't think most people (with the always exceptional minority of crazies) would argue this point with you out of spite or with the goal of proving you wrong but rather out of concern for your daughter and a hope that sharing one's own experience can make a difference in the life of another child and family going through a familiar struggle.

"However, there is no point arguing about it as only time will tell how your daughter will feel about it. I do feel it is important to hear the experiences and opinions of adults who have grown up with disabilities or differences (whatever they may be). I think theirs is the most relevant voice in this debate."

Of course you are entitled to your opinion and your disagreement, and I thank you for posting. A few thoughts:

You're absolutely right, there is no predicting how Schuyler will feel about anything I've written about her and her condition. That point has been made in countless "How is she going to feel one day when she reads...?" posts and emails and criticisms. It's a valid point. You have to remember, however, that our feelings and opinions and reactions to Schuyler's situation aren't happening in a vacuum. I'm not writing one thing and saying another to her. From the very beginning, she has been raised to understand that no, she's not like other kids and yes, she has to work hard to overcome the obstacles that are in her way.

Schuyler knows that there's something wrong with her brain, she understands better than you or me or anyone else how true that is. She may choose to see it differently as she gets older, but she'll make that determination on her own. And she'll do so knowing that her parents love her and are inspired by her. The idea that she will one day read something I wrote and suddenly she'll know some dark secret about how I visualized her disorder is absurd. She already knows what the title of the book refers to. We don't keep anything from her regarding her condition; THAT would be offensive, wildly so. Schuyler's not a delicate flower. She's a tough kid, because she has to be, and she's also a realistic one.

People acting out of concern for Schuyler are certainly within their rights to do so. Concern that she will be somehow wounded by an acknowledgement of her very real, very hard condition is frankly insulting to her, though. It sells her short. It denies her very real ability to face her condition head on.

"I do feel it is important to hear the experiences and opinions of adults who have grown up with disabilities or differences (whatever they may be). I think theirs is the most relevant voice in this debate."

Their voices are both absolutely relevant, and at the same time completely beside the point. I hope you don't think that after all this time, I haven't been listening to the opinions of persons with disabilities, along with their families and caregivers. But the thing you might not understand is that if I've heard from a hundred people, I've heard about a hundred different opinions and perspectives. There is no consensus. Well, of course there isn't.

For every person who is inspired by the Holland poem, there are equal numbers who find it to be condescending and ridiculous. For every person who depends on their faith in God to sustain them, there's an equal number who feel like that God has turned his back on their loved ones, or who have lost their faith altogether. For every person with a disability who finds comfort in People First Language, there are equal numbers who self-identify with terms like "cripple". Which of these voices should dictate how my family and I deal with Schuyler's disability?

"I personally disagree with your use of the term "monster" to describe something that your child cannot separate from herself. This goes against every instinct I have. I am an educator but not a parent."

I think this is an important point. I respect that my philosophy goes against your instincts. I am going to have to insist, however, that you likewise respect the fact that those educator's instincts are very different from those of a parent, particularly if you don't have children of your own. And I don't mean to condescend, either. But no matter how dedicated of an educator you may be, no matter how much time and energy and personal emotional investment you put into your work with our kids, there is a very real difference between our worlds.

You get to go home at the end of the day. You get to watch our kids grow older and leave your care. No matter how challenging or how impressive our kids' disabilities may seem to you, the fact remains that we live with them in ways that you simply don't. From the moment our kids' disabilities revealed themselves to us, entirely unanticipated, we live with the reality of those disabilities every minute of every day, and not for a year, or a few years, but for the rest of our lives. We don't just worry about whether our kids are going to successfully complete the school year. If our kids survive their hard childhoods, we then get to wonder who is going to take care of them when we die.

I hope you'll understand how something that is a part of our beloved, beautiful child can still be monstrous, for her and for me. In the end, Schuyler will come to her own conclusions about that word and about her condition. But she won't be surprised, and I seriously doubt she'll be offended. I don't give Schuyler sugar-coating or soft language.  I will always give her love, and the truth. Those may actually be the two most valuable things that I have for her.

14 comments:

Elizabeth said...

Yes. Bravo. I have always loved the way you describe Schuyler's disability -- loved your frankness, ballsiness, humor AND despair over it all. Honesty, too.

Emmabee said...

“...Monsters are real, and ghosts are real too. They live inside us, and sometimes, they win.”

-Stephen King-

JLH114 said...

You focused on the fact that the author of the comment is an educator and so cant really understand parenting a child with such a disability. However, certainly some parents also agree with her point: "I personally disagree with your use of the term "monster" to describe something that your child cannot separate from herself."
It makes me think of a story of a parent in frustration telling her teen son, "I really hate your Aspergers!" and her son retorting "Well, then you hate me, so **** you!"

Rob Rummel-Hudson said...

I think you're mischaracterizing my point. Which, again, you are free to do. But I never said a teacher can't understand. How well and truly fucked would Schuyler or any other special needs child be if that was the case? I said our perspectives and our instincts are different, because our experiences and our level of emotional investment are different.

As for what other parents feel about the way I characterize my own child's disability, not to be indelicate, but why would I give a shit? Any more than they should care about my opinion of their philosophies? I imagine you'd take offense if I wrote about how pointless someone else's approach to their own kid was. And you'd be correct to do so.

Katie said...

The question I have for your commenter is: If you don't call it a monster, what do you (or what does Schuyler) call it?. It's not like "disability" or "disorder" or "bilateral perisylvian polymicrogyria" brim with optimism and positive vibes. I'm all for calling it what it is.

Carol Askew said...

I agree with you Rob. Not that you need the validation – I think every parent deals with this in their own way and that’s okay. My daughter Megan is aware enough to know that she’s different from the other kids, and that it sucks big time that she can’t speak. I tell her that she is a wonderful girl, I love her very much, and that her brain and muscles just don’t work the right way for her to be able to talk, and I’m so very sorry. She has to work so much harder for everything, and if I tried the “we’re all different in our own ways” line, it just feels like that is diminishing the crap she has to deal with that most kids don’t. And her brother needs to understand too that yes, sometimes, Megan gets “special” treatment and that we have different expectations for the two of them, and there’s a good reason for that. Megan got a crap hand – a “monster” – along with other kids around the world who have various kinds of monsters. I can’t say that I love every part of her, even her “monster”, because I would take that away from her in a heartbeat if I could.

JLH114 said...

I apologize if I mischaracterized your point. Although I might be free to do this I certainly do not wish to do this! This is an interesting discussion to me. I have family members with special needs and I also work with families of children with special needs. I am here to share and learn- not to aggravate, at least not purposefully.

I was just trying to refocus on the point the teacher was making- that a child may have difficulty separating out her parent's attack on her "monster" from an attack to herself. Some people with disabilities see their identities as integrated with their disability, that it cant be separated out. This is why I shared my story of the boy with Aspergers. Of course as kids get older they become more interested and vocal about how they define themselves. I imagine this was will be an ongoing conversation as Schuyler grows older too.

Rob Rummel-Hudson said...

I'm not aggravated, I just want to make sure that I'm being understood clearly.

Every family is going to have a different approach, based not just on their own beliefs but also on what the parents know is going to resonate most clearly with their child.

Schuyler has a very well-developed nose for bullshit. Trying to sugarcoat her condition wouldn't fly with her, even if it were the right thing to do, which I personally believe it isn't, ever.

Amanda said...

From the moment our kids' disabilities revealed themselves to us, entirely unanticipated, we live with the reality of those disabilities every minute of every day, and not for a year, or a few years, but for the rest of our lives. We don't just worry about whether our kids are going to successfully complete the school year. If our kids survive their hard childhoods, we then get to wonder who is going to take care of them when we die.

Amen. Best damn take I've read on our lives with monsters, yet.

Christopher said...

Rob,

As a friend and deeply committed teacher, I hope you know that you have my complete and total support. Parents are always the first and last teachers to their child.

The world is a hard place for all of us, but particularly those that don't fit the expected molds.

You speak from a place of love and your daughter will always know this.

-Christopher

Tiffany CaseArd said...

People really still try to debate with you? It's like arguing with a parent over what they want to name their child or whether to raise them in the city or in the country. But what if the child grows up and resents it? Well, that's sad and all but you can't know which choices will be resented and which ones won't. All you can do is make your best guess based on your child and your values, hope for the best, and set aside a little money for therapy just in case.

Besides, monster is the perfect word. Something that's uninvited. It's big. It's menacing. And most importantly, it's not who Schuyler IS. It's like the old greek idea that a genius is something you have rather than something that you are. http://www.ted.com/talks/elizabeth_gilbert_on_genius.html

farmwifetwo said...

We live in a society where everyone thinks they are owed and nobody wants to take responsibility for themselves.

Sugar coating language doesn't change the fact that if something significant is wrong, normal will never happen and yanno... life sucks most days and we all have to learn to deal with it.

I have never told my eldest he isn't "normal" and he's no fool that he probably hasn't figure it out. He's the only one with a quarter time EA, the only one with OT, the only one with a fusion/notebook but academically and socially (although this one is becoming an issue and he's going to social skills camp this summer) he's holding his own. He doesn't get to use it as an "excuse"... There is no reason he will not be able to deal with the real world on his and it's terms so we simply haven't explained it to him yet. Also, he doesn't seem to notice... which I am certain is going to make for an interesting discussion in a couple of years at Gr 8.

So, we all make our own choices based on our own children and our own parenting styles. We'll always offend someone.....

My youngest has severe autism... which is an entirely different set of answers when we get questions from the elder... and we do sugar coat it to a point, we do not lie, due to his anxiety issues.

wjameshenry said...

Thanks Rob and others for this doscussion, it helps me make my own choices about how I tell my son Kingsley about his disability. I think showing him videos of Schuyler has been helping him to understand his similarities with her and differences with others. I want him to understand his disability but I also worry that this will be too depressing for him. James

reddog said...

I've been lurking but this is my first comment.

I finally pinned down what bothered me most about the "I'm an educator not a parent blahblah" statement: Nowhwere does s/he say "I am a person with a disability/illness/something out of the norm".

Yet s/he presumes to speak for others, and assumes that Schuyler (or us) are apparentlly so dumb we can't tell the difference between ourselves and the something that we struggle with?

For me, it's major clinical depression. I think of it as a monster, myself, as something living inside of me that is not me. I have no trouble distuingishing the two. From how you describe Schuyler, I have a pretty good sense she is quite capable of making that distinction herself. Sheesh. Give the kid some credit. Really.