One of the things about Schuyler's condition that you might not know is that it causes her to drool at times. It's the same thing that makes her mouth unable to form consonants, a lack of sensitivity that causes her to slobber without necessarily always feeling it on her face. It could be much worse; in some kids with PMG, it actually manifests itself in partial facial paralysis.
I don't write about it very often because it's certainly not how I want her to be represented. Every now and then she gets made fun of for it, both in person and even online (including once by a "friend" of mine, although I doubt very much that she realizes that I know who it was). But all the same, it's part of life with Schuyler's monster, and it's part of who she is. No embarrassment, no shame, just a quick word (or even a discreet "wipe your mouth" gesture) and she takes care of it. But still, it's there and we deal with it.
Yesterday, she and I were waiting to pick up some food at a Chinese restaurant. We were both sitting there sort of lost in thought, and so when she started to drool, neither of us really took notice at first. When I finally saw it and took out the ever-present napkin to quickly wipe her face, I noticed a woman sitting a few seats down from us. She was watching us without even trying to hide her gaze.
Just about this time, our food was ready. I grabbed the bag, took Schuyler's hand and stepped toward the door, giving her face one last quick wipe. As I did so, we passed the woman. She looked down at Schuyler and then back at me.
"That's disgusting," she said.
I glanced down to see that Schuyler was a few steps ahead of me and couldn't hear me. I then looked at the woman and opened my mouth.
Maybe I was going to take advantage of this possible teaching moment to educate her about kids with disabilities. Or perhaps I was going to use my quick, cutting, fancy pants authorly wit to sting her with some erudite word missile that would cause her to stop and think about her lack of sensitivity. Or maybe, just maybe, I was going to offer a kind and forgiving word or two, something to make her small Grinchy heart grow three sizes that day.
"Fuck you," I said.
We walked out quickly as she stormed into the dining room, presumedly to find a boyfriend or husband to come give me a beat down.
And here's the thing. I'd love to be able to say that as I think back on that moment, I now have a handful of intelligent responses that I wish I'd used on her. But honestly? I keep coming back to "fuck you".
79 comments:
Yeah...You got that one right.
I know how it is... sometimes those two words are the only two that come to mind.
I agree with Todd.
I don't think anyone could have said it better
The world truly eludes me sometimes....
I don't think you could have picked a better two words.
I must admit, I was a bit shocked by the woman's rude comment! Over all the years of rearing my children, I never heard an adult make such a comment...even though it was during a time when most folks had much less exposure to and familiarity with kids with disabilities. I suppose the difference comes down to visible vs. "hidden" handicaps. I think people are much less judgmental when a kid is in a wheelchair or uses crutches. But I'd say I often reacted with similar emotion when folks stared or kids made tacky remarks...it's a knee jerk reaction of wanting to protect our kids and outrage that someone would try to hurt them.
Two words in response:
"Damn right."
Also, "go you."
I can think of other two-word phrases, but those two pretty much sum up how I feel about your response to Mz. Insensitive Beyotch.
I will never forget the day that a perfect stranger called my friend with CP 'disgusting.' The memory still makes my knees quiver.
I don't think friends and family can really, REALLY wrap their heads around the fact that people (i.e. this woman) can be so ill-mannered without reason. Granted, your response was not the most genteel, however sometimes when we are dealing with the illiterate, we have to stoop down to their vocabulary level.
I think this time you got it right.
Rob,
Sometimes ya gotta leave class at the door (she did) and let em have it. The bitch deserved it.
Good for you!
And really? Sometimes a hearty "fuck you" is all these people deserve. It's not worth trying to educate some people. They'll never understand.
Good for you. I say that was quite eloquent.
Only thing I would have added: Fuck you Bitch.
That is absolutely terrible (what the woman said). I hope Schuyler didn't hear. It was probably good for her to see you standing up for her if she did notice the woman's comment.
I don't know...I agree with others here that there is no educating some people. My temper would have gotten the best of me in this situation, and I would have reacted as you did. I often think that someone *that* rude must be very unhappy with their own life, and that thought consoles me in these situations.
I agree with the previous comments: I think you got that one perfectly right.
The advantage that "fuck you" has over your more intelligent replies is that it's quick, and you don't pretend you actually care what Lady Queen Twit-of-the-World thinks.
I can't think of any response that would have been more appropriate for this situation. Frankly, I think it's better than that woman deserved.
That sounds about right to me....
wish I had that on my toes response.
I usually come up with the perfect thing to say in the car a few minutes after some asshat says something about my daughter.
obviously, what's disgusting is her attitude.
I used to have a kid with cerebral palsy in my camp group (for 4 years) who drooled sometimes. She wore those little athletic wristbands and we'd just tell her, or make a mouth-wiping gesture to let her know. The kids thought it was gross at first (they were 5!) but as soon as they got used to it, they would very politely inform her if it got too bad and otherwise ignore it.
it's a shame that 5 year olds have better manners than grownups sometimes.
Schuyler wears little pink and purple wristbands sometimes, for just that reason.
Geez, people are ridiculous sometimes.
I got teased a LOT when I was little (and not so little) because of some muscular problems I have, and I wish I could have had the courage to say "fuck you" to all those kids. (Of course, that probably would have sent me to the principal's office...)
I'm sorry that that happened. I know my introverted self would have just turned red and maybe angrily blurted out something borderline incoherent (and then thought of many better things to say, possibly including your response :).
It really does boggle the mind....how could ANYone be so rude, so heartless, so HORRID? ick. :(
Rob, your response was perfectly appropriate. And it does not matter if she knew that Schuyler had a disability or not. Because she is a child. Because she was drooling, not spitting (involuntary vs. voluntary). Because Schuyler addressed the issue upon becoming aware of it. And more importantly, because her own response had none of those things. She was an adult, her actions were voluntary, but she did not attempt to improve them by apologizing or even indicate that she realized she should.
She was guilty of transgressions far worse than drooling and was such a bitch she never noticed. Fuck you was the right thing to say.
I am just unable to comprehend the human species sometimes. What a bitch.
Sometimes you have to fight monsters with something more solid than a rubber sword. I think you definitely got this one right. I can believe the insensitivity of some people!
I think "fuck you" was the picture of eloquence on this occasion...we get "starers" quite often and I always handle it differently. My 13 year old daughter always wants to tell them off...but, I usually counter that with, let's show some maturity...let's assume they have never seen a handicapped child drool before...let's change his bib...etc. My motherly instinct, though, has always been to knock their block off. So, I can appreciate and enjoy the fact that you said what I SO many times have wanted to say...fuck you!! HAHA! Thanks so much for a much needed laugh today.
"Fuck you" was a superb reply, but I also think, "You're disgusting, bitch," would have worked.
I agree your response was right on, Rob. Fuck her indeed.
*applauds*
It's exactly what I would have said.
I don't think what that woman did was "rude" or a case of "bad manners". I think there has to be something very just........WRONG with her.
We all, I think, treat people unfairly at times and we all sometimes think thoughts that we are ashamed of but to vocalize that, MUCH LESS where you or Schuyler could hear is just waaaaay beyond me.
I probably would have added the word "asshole" after the "fuck you" but otherwise, your response was perfect!
The woman was insensitive, stupid, unimaginative and unkind.
Sure, it'd be nice if we could always have the wherewithal to educate the moronic, but when someone like that attacks a child (bully, much?), 'fuck you' is the only response that comes to my mind, too.
If such a narrow-minded person had the nerve to say such a horrible thing, they are probably too narrow-minded for us to educate them anyway. So fuck her, indeed.
No, actually, I'd say you did just fine.
With Darren, the drooling aspect is the one that caused him the most pain growing up. I think people were even more insensitive during that time frame in general (he's 29 now)and the thing that pained him the most is that "people acted like I could help it, as if I'm doing it just to offend them or worse." His own father would sometimes get annoyed/impatient with it. Darren got to a point where he developed his own "fuck you" mentality towards ignorant idiots. Most people are decent and everyone who knows Darren just keep alot of napkins handy. I remember one time we were out somewhere and some kid made a rude comment (the kid was 12 or 13, old enough to know better) and I could tell it brought alot of that old hurt back for Darren. It was Rymer who pulled off the "fuck you" of the day.. he looked the kid in the eye, smiled, then proceeded to spit in the kid's face and said, "spitting is gross, drooling is just messy"
Good for you, Rob. Really. I agree with Lara though, I'd have said "Fuck you, bitch"
It's shocking that people can be so rude and stupid. I think your response was not only appropriate, but well deserved. What a horrid bitch!
That is totally, completely awesome.
*cheering wildly*
Yeah, I'd say you got that one just right, Rob. And, thanks for saying the very thing that so many of us only say inside our heads for fear of reprisals (or a good ol' beat down!). You may not have been erudite but it sure must have felt good to say it and mean it!
Right on.
"Fuck you" is exactly right.
*stands at her computer and applauds*
Good for you, Rob.
I sincerely doubt she would have listened to any education you offered. I think your response showed restraint. I would have wanted to kick her.
Ignorance is truly disgusting.
Those were the perfect words. Two simple words that got through to the mean ol crab.
-Shannon in Austin
What a douche. Who would say that about a child, period? Even if they *knew* the child was NT?
Anyway, that reminds me of something someone said to us once... (Its not as terrible, though did piss me off.)
We were in the grocery store and I had my (23lb) 3 year old in a baby carrier on my back. (He has BPP as well as arthrogryposis, non-verbal and is just learning to stand.) Well, the lady in front of us in the check out line kept looking me up and down. Finally she asked me, in a very disapproving tone, "that child is too old to be packed around like that, put him down and let him run around!". I responded "actually, he can't walk" and turned away from her. The lady scoffed and said (very loudly) "well have you ever thought that maybe that's because he's tied up in that thing?" I glared at her and said "no, I'm pretty fucking sure he can't walk because he has a joint deformity". Cunt didn't have anything to say then.
You absolutely got that one right...I might have even added hand gestures in case in all her ignorance she failed to understand the words themselves.
Rob, i applaud. i would have done the same without any question, and yes ... adding "bitch" to the end is icing on a cake.
I remember a really really long time ago you posted a photo of schuyler on flickr and I noted that she was drooling. I didn't say "eeewwwww! icky! she's drooling!" i think i said it was a gorgeous photo and thought maybe you should have photoshopped it to remove that part. you removed the photo.
i remember feeling incredibly GUILTY that i pointed it out, and then felt horrible that i suggested you edit it to make it look better. to me, it was a gorgeous snapshot of that one moment. and i feel bad about it to this day.
your daughter can drool all she wants, or ... doesn't want. She's still infinitely cooler than that woman ever will be. Ever. ever.
I can't think of a single word to change. What a stupid bitch. Good for you, Rob.
There are a zillion reasons why a person might drool: disability, cancer, stroke, nerve damage, Novocaine...fuck the twat, she's too stupid to know what social graces actually are.
I think I love you...
Good for you. I know that there is one woman in Orlando who will think twice before snappily asking if someone's child is a little old not to be talking after badgering the child for her name and the mother explains she can not talk and graciously tells her her name. I believe I left her crying in the Dollar Spot.
Who the heck do people think they are and why is it their right to pass judgement. Don't let me feel you are attacking my child because let me tell you people thing there is not fury like that of a woman scorned, wait until they see the circle of hell they are put in by the mother protecting her precious miracle.
Schuyler is lucky to have you! And for the record, I am sure it will end me up in some place very hot and miserable after I am gone, but I cheered when you wished that woman cancer in your book.
Chinese food: $30
Paper Napkins: $1.59
"Fuck You" to a ignorant adult who you would think should know better: Priceless.
Good for you. I wish I could have seen the look on her face. :-)
Sadly, I think we (society) sometimes forget that the behavior we're seeing in another person could be due to a disability that isn't necessarily visible.
I don't know what that lady's problem was, it was only drool. It wasn't like Schuyler made a rude comment about one of her kids or anyone else in the area (which is so much worse - wait, that's what SHE did, silly me; and as an adult makes it all that much worse!!).
When did our society stop letting kids be kids? Drooling is a fact of life for some kids (even those without a monster of some sort).
Thanks to you and to Schuyler, I'm now more aware myself that behavior I see may be caused by an invisible monster, but (even without that insight) I would NEVER make a comment about it. I appreciate the insight reading your blog for the past two years and reading your book have given me.
She soooo deserved those two words and I'm glad you were able to say them. :-) You go, Dad!
On the surface what she said was dispicable. But I wonder, as I have learned from reading your blog and others, is it possible that she herself has some kind of disability that wasn't obvious, and doesn't have the ability to understand what she said was wrong?
Beth - yes I believe she did have a disabilty - it's called Dried up Cunt Syndrome or DUCS for short. Tragic, tragic disorder, I'm doing a walk for them this weekend.
No diggity. You served up the perfect retort. Even if she thought Schuyler was a normal kid who was just goofing around and acting gross it was not her place to comment.
I have been with my friend who has CP when average-looking middle-aged people has imitated her limping walk and laughed. My friend ignores these jerks but I usually flip them the bird and inform them that they are assholes.
Was she the one wearing the shirt?
http://bp1.blogger.com/_pnGKxbRjGJA/SCCCh_yEkhI/AAAAAAAAAM0/AbffEt8RXZ0/s1600-h/english5.jpg
A friend of mine was using the restroom at the mall. Her daughter, Chelsea was unable to fit in the stall with mom due to her wheelchair. Chelsea has cerebral palsy. So, she sat right outside of the stall. A woman came in with her young daughter and the woman said, 'Look honey, that is what happens when you do drugs when you are pregnanat". My friend came out, got down on one knee and looked the little girl in the eye and explained how the umbilical cord got wrapped around Chelsea's neck causing the cerebral palsy. She did not grace the woman with a look at all. Some people simply suck!
There are rare times that particular phrase is the only one that properly rises to the occasion. You did well.
Perfect reply. Nothing more to say other than karma is a bitch and will bite her in the ass.
Signed,
Widow of husband with ALS who drooled incessantly due to disease progression
Don't bitches like that just leave you spluttering with their stupid cow-i-tude?
My daughter's monster is starting to become more obvious to both her and to other people as she gets older. I want to wrap her up in my arms and protect her from the world while at the same time taking a baseball bat to the teeth of anyone who DARES give her shit for stuff she would give her beloved dinosaurs to be able to control. So far it's still mostly little kids who say "Doesn't she talk?" But the day is coming when cows in restaurants will have opinions they think I need to hear.
Instead of giving them what they deserve, I'll probably be limited to saying "Fuck you." I would probably have stood there stunned into silence if not for your helpful suggestion. ;) "Fuck you" isn't very informative or educational, but it's more information about my kid than they deserve anyway.
Thanks for sharing Schuyler with us. She's one hell of a kid.
I was so tempted to say the same words to the heartless tech yesterday during my two-year-old's EEG.
People like that need some more "fuck you's".
Compared to grabbing her throat and slamming her against the wall while her legs dangled and she sputtered.... yea, I think you got it right, you gave her just the amount of energy she deserved.
Jesus fuck. I agree with all and sundry that there was really no better way to address the situation -- if it had been me I wouldn't have been so succinct. "What the hell is your problem, bitch?" and "You're the disgusting one, you uppity self-righteous c__t" and "Mind your own fucking business, why don't you?" would have only been the beginning. But I've never really been known for my diplomacy. ;-)
The sheer nerve of some people, especially know-it-all busybody biddies like your and urchingrey's examples, poking their nose into other people's business just so they can turn them up in disgust, is mindboggling and appalling. There's no point in taking the high road with them, they don't deserve that much consideration and it wouldn't register with them anyway. I hope she did get all indignant about you with somebody who has a clue and could point out that she was in the wrong to begin with.
Fuck her, indeed. Fuck her twice. SHE is disgusting.
I really really hope Schuyler didn't hear her.
No, that was exactly the right thing to say.
BTDT, but didn't say those words, but should have. My 9 year old drools enough to soak 2 bandanas a day. Kids at school just comment on her different colors and types of bandanas, and not her drool. I don't even think they notice anymore, and if they do, they wouldn't say anything to their friend that they all love.
Adults are not usually so nice. It probably is an adequate come back in some situations. Now, if you want the comeback the therapists all teach, it is "SO?" Can't argue with it, and there is no good come back to that single word!
I can't think of a better thing to say, Rob. Fuck her.
Correct response, definitely.
My husband said the same thing once to someone who needed it. I was so proud of him, once I was sure that the child-loathing guy wasn't going to go insane and shoot us all.
The monster is really beside the point -- I don't care if Schuyler was drooling for the total fun of it, she is a KID and people who think they have a right to never have to look at or deal with kids should either stay home, keep their mouths shut, or expect to be told to fuck off.
I don't know why we accept things so quickly, easily and with such enthusiasm as children, but adults, who have seen a lot of the reality of the real world and things that are different can be so ignorant, mindless, and stupid.
People like that need to be beaten with stalks of celery.
You absolutely did the right thing -- stepping up for your daughter, yourself, and venting some righteous anger are all cool things.
But I am a little disheartened by all the name-calling here towards this nameless woman at the restaurant. She behaved horrifically, but from what has been shared here we really have no idea what her deal is.
My dad's "brain monster" left him without his social filters and he would frequently let loose with racial/sexist slurs in public. He truly knew better, but he was sick.
So, um, there's that possibility.
I know I'm giving her a huge benefit of the doubt, but the truth is we just don't know what her deal was. She could have been off her meds, just home from the war, or, yeah, a horrible excuse for a human.
Defend yourself and your awesome girl at all costs, but I just don't know that it's useful to presume too much about this (at best) horribly misguided woman.
Sometimes those are the two most perfect words, that was one of those times. Good for you!
One time I was nursing my little tiny crazy colicky baby, sitting on a bench in the Target. This woman walked by me and sort of stopped and looked at me and then grabbed her daughter's hand and said "ewwww!" really loudly. And STOOD THERE. So I said the same thing to her that you said, and even though I felt bad that her daughter had to hear it, I figured the hell with it. She's the one who let her daughter hear her say "ewwww" to me about breastfeeding. Ooh I was steamed and I am now again, thinking of you going through this. Good for you.
When I had my wisdom teeth out, I was told there was roughly a one in a million chance that they could hit a nerve that would cause one side of my mouth to be numb indefinitely. Surprise - I was a lucky winner! After I was caught several times with food on my chin (which I couldn't feel) by giggling friends, I spent the remainder of my high school years eating with my hand over my mouth.
The majority of the feeling in the right side of my mouth has slowly been restored, though not completely. So on behalf of droolers everywhere, whatever the cause... thanks for the heartfelt retort.
Pretty soon she'll figure out a way to have those same 2 words on her big box so that she can use them as needed. No appologies needed.
You got that one right!! I would love to come up with a comment when I catch people staring at my son. Something quick, to the point, and something that would make them feel like complete shit. once they realize that the whispered comments, the double takes, and the obvious stares are inappropriate and hurtful. Yes something quick....yeah, F*ck you should do it!! Pretty much sums it up eh?! But if you can think of a good one for me to use so it doesn't look like I copied from you let me know! :) Something that will sting and stick with them long after we're gone.
Also to Galen who posted a comment...unfortunately people are just as judgemental to my son who is in a wheelchair & drools. Sometimes I just want to scream at them to stop looking at him with pity in your eyes. It should be that I look at them with pity in my eyes because I feel sorry that they are such a$$holes!
This was the right choice. couldnt have done it better any other way.
First, let me say I just finished the book, and it's awesome!
After reading this post and the story in the book about the nasty lady in the grocery store (great comeback, Rob!)it just reinforces my belief that some people in this world have MAJOR big-balls, voicing their unsolicited opinions like that. Who the hell do they think they are, anyway??
My 5 year-old daughter has autism. Lkie Schuyler, she has her own "languauge". One day we were at the library and she was sitting in her stroller babbling away happily while I was on the computer. Yes she was a little loud, but none of the other patrons seemed bothered by it. A librarian came over to us and said to me, "It looks like your daughter needs some attention." I turned and giving her a "Who are you, the Parenting Police?" look, replied, "She's fine, thanks." Then the woman said, "Well, she keeps making those noises." Giving her another "Why don't you mind your own business, bitch?" look, I replied (with noticeable irritation) "She has autism, she makes those noises!" The woman got a dumb look on her face and said, "Okaaayyy..." and walked away. My teen son was with us and judging by the look on his face, he wanted to tell her to fuck off, which would have been cute in the library! I spent the next hour stewing over the whole scene. I should have said to her, "She has autism. You're in a library-why don't you go look it up??" I seriously considered reporting her to her supervisor. Under the ADA act, my daughter has the right to be in the library or anywhere else I choose to take her. I appreciated Rob's tip in his book to familiarize myself with the disability laws, because maybe next time I encounter a moron like this woman, I'll threaten an ADA lawsuit and enjoy watching THEM squirm.
Perfect response to such an idiot. I just read the part in your book about the woman at the store, when you were buying ice cream and I imagined for a moment I was there to speak out on Schuyler's behalf. People like that should not be allowed in public, idiots, idiots, idiots!!
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