December 10, 2011

Well, he did ask...

This might be a story of how, in a moment of truth, I failed to properly advocate for Schuyler, and how it ultimately didn't matter. Or it might just be a cute little anecdote. It may very well be an indication that everything is going to be okay. You decide.

Last night, Schuyler and I were at a favorite semi-fancy grocery store in our neighborhood, looking for a birthday cake for Julie. (I know, a day late. Don't judge.) We don't go there all the time, on account of that whole "not made of money" thing, but it's a nice place with an interesting clientele. A few weeks ago, I found myself standing next to one of my favorite actors from one of my favorite tv shows, for example. (Idea for a new show: Looking at Beans with Buddy!)

There's a slight snoot factor with some of the shoppers, but the people who work there are super nice, and the store hires a lot of persons with disabilities and doesn't hesitate to present them up front as the face of the store. That matters to me, a lot.

When Schuyler and I shop, we have fun. She's still young enough and... odd enough to find adventure at the grocery store, and really, so am I. (Well, not so much with the young, but certainly the odd.) On yesterday's trip, we stumbled across a display of very cool holiday hats, and we were trying them on and being goofy when a gentleman stopped and watched us for a moment. I was posing for Schuyler and she was laughing and jabbering happily. As she does.

The man waited until he caught my eye. "Is there something wrong with her?" he asked.

He didn't say it rudely, and I suppose he might have even thought he was simply being curious. But he said it, and he said it right in front of her, as if she wasn't there, or more to the point, as if she wasn't capable of understanding what he said. An assumption, far too common, made based on the fact that she didn't communicate in a way that he understood.

I would like to be able to say that I responded with patience and took advantage of this teachable moment to educate him on Schuyler's disability and his own need for empathy. And really, I wouldn't mind reporting that I instead came back with some clever zinger that put him in his place, either.

But honestly? I did neither. I stood there for a moment, dumbfounded. I dropped the ball.

The ball did not stay dropped for long, though. Schuyler scrunched up her face, pointed to the man and gave him a thumbs down.

My hero.

The end of the story is a little anti-climactic. When I saw Schuyler, I broke up laughing, and due to my persistent holiday cold, that laughter led to a coughing fit. I couldn't stop, and that cracked up Schuyler, who then started laughing her goony little laugh. So basically, we answered him with laughter and coughing. The man just sort of walked away while I bent over coughing and Schuyler pounded on my back, still laughing.

I guess we answered his question. "Yes, she speaks Martian and I have tuberculosis. Happy holidays."

So there you go. Self-advocacy at its most concise. I like to think we're raising her right.

43 comments:

Erica said...

thumbs down is right! love this.

Bridget said...

When I was young, my mother was asked the same question more than a few times. She would mumble "nothing" then drag me out as if the store was on fire. That is dropping the ball. You didn't drop the ball, you just needed a pause to recover. Schuyler was simply quicker than that pause.

lisa said...

Yay Yay Yay for Schuyler, for knowing just the right thing to say to put that very rude man in his place. You have taught her well.
Lisa

Becca said...
This comment has been removed by the author.
Ollibean said...

Yes!Way to go Schuyler! We have had some similar experiences with neanderthals like you and Schuyler encountered. I had that same ,"what did you just say? incredulous pause..and while I was figuring out what to say H looked at the unenlightened person, gave a quizical glance, gave a wise beyond his years,small laugh head shake..(the kind that looked like he was thinking , poor jerk you don't have a clue)..looked at me, we cracked up and just left her standing there..It was pretty awesome!

Julia O'C said...

This story makes me so HAPPY!! Schuyler is going make her own way in this world.

Suzanne said...

I haven't had that question yet, and if I did, Janey would not understand it, but if she were able to, I'd love to have her react just like Schuyler did.

Sabrina said...

This little story made me laugh - at least the end did. That guy might've thought he was 'just being curious' but he lacked tact for sure! Thumbs down a million times over for that one, Mr. Tactless Dude. Love ya, Schuyler!

Suzanne said...

Big thumbs up to Schuyler for her perfect response! I mean, really... I'm not sure the most eloquent and articulate speakers could have handled that situation any better. I also think it's pretty awesome that, not only did you not feel the need to provide a more precise response, but you let it go and just enjoyed the moment with Schuyler (I mean... as much as you could while you were coughing your head off). :)

Hooray for odd & goofy dads that care more about connecting with their kids than the (mis)perceptions of others!

(Another Suzanne)

ANewKindOfPerfect said...

Schuyler is awesome. :)

Mary said...

"Buddy" as in Brad Leland of Friday Night Lights? Brad was one of my regulars when I worked at one of the Allen Starbucks locations. We always gave him a lot of shit for being a "movie star." We had a group of deaf ladies who met there regularly who freaked out on him once when they recognized him and he handled it with class. Nice guy. I believe he lives in Lucas.

Also? Schuyler's response and the resulting cacophony is the absolute perfect response to that senseless, probably unintentionally rude, but terribly rude nonetheless question. Eff teaching moments. Schuyler rocks at putting him in his place!

lilmikeymoodswng said...

Schuyler is my hero. Plain as that.

I'm so in awe of her that I saw you guys at Petco a while back and just couldn't say hi (that and don't want to be a creeper).

I'm 34 years old and I'm nowhere near as cool as your kid.

Liz Ditz said...

Who says Schulyer has trouble communicating?

And what Bridget said.

Hope the Great Lung Rot 2011 is over soon.

Ethel Mertz said...

I wish individual comments had a "Like" button - everybody's said it so much better than I can. You guys rock! Sorry about your coughing fit... but the whole post had me laughing so hard I snorted.

~ Sil in Corea said...

Schuyler is Wonderful! (Hope the lung-crud leaves soon, too.) Lots of Love from Asia, ~ Sil in Corea

Jeff said...

Way to go Schuyler! We just had something similar happen while we were at an uppety grocery store. A father recognized Ava and I from her new swimming class and he walked up to me and introduced himself. The next thing he asked is "Is she Autistic?" Ava and I just stared at him and I was so dumb-founded he would ask this in front of her. She CLEARLY understands and HEARS what people say! I wished I had a clever remark as well- he was not intentionally being rude-but like another commenter said-it is rude none the less. All I did was used it as a teaching moment and explained that she had Worster-Drought Syndrome and how it affected her. In the end, I wished I hadn't be cause it was not his business and I wondered what I had just taught Ava :(

Penny said...

I think Schuyler rocks!

joee_t said...

yay, schuyler!

Marc said...

"Ask a stupid question, you might get a stupid answer."

And in this case I don't mean brain stupid I mean corny stupid.

Ubiquitous Pidgeon said...

Go, Schuyler!

Miz Kizzle said...

There is definitely "something wrong" with Rude Grocery Store Guy. I attribute it to the lack of a filter between his thoughts and his words. My MIL suffers from it bigtime. It makes her ask (loudly) "Is she pregnant, do you think, or just fat?" when we encounter random chubby ladies when we're out and about.
Human beings are naturally curious and I like to think there is a little bit of concern imbedded in questions about Schuyler but it's not okay to ask right in front of her.
S. handled it very well.

soulChild said...

You start this story with Shuyler not being too old for this and not too young for that, and it sounds like she is on the cusp of something wonderful. I think a simple little pause has made room for Shuyler for interject with her own wise and wild version of self-efficacy. All made possible by watching her dear ol' dad model advocacy on her behalf!

Loves Pickles said...

Awesome. You have an awesome kid, sir!

Tina Kewy said...

Definitely an anecdote!! I couldn't stop laughing! GO SCHUYLER!!!!!

You are the most awesome little girl I "know" :) uhm, sorry young woman I know :)

Leslie said...

Just beautiful - a perfect response to an unbelievably rude question. Hope the cough gets better soon!

R said...

I recently got a job in the agency in my state for people with developmental disabilities. It's just a clerical job, and my first job working for the government. Because of the kind of agency we are, we have a higher-than-usual percentage of employees with developmental and other disabilities. But I've also noticed that people who work for the government tend to be quirky, much quirkier than people from private industry where there is more pressure to conform. I've spent some time wondering about some of my coworkers, whether they have a developmental disability or are just quirky. Finally I realized that it shouldn't and doesn't matter. This man was rude, and Schuyler put him very neatly in his place.

Laurel said...

As a bystander, yours and Schuyler's seems like the perfect response, conveying that that wasn't a question that merited a thoughtful or serious rejoinder. Because, I mean, really. How rude!

Elizabeth said...

Awesome, awesome story. It reminds me of the time a man asked me at a party "Is she capable of love?" -- my Sophie sitting right next to me, watching the man as he popped peanuts into his mouth.

macjo said...

I really hope Schuyler is proud of herself!!!! And even if you didn't know what to say in that tiny moment before she replied, the sum total of your advocacy and love for Schuyler exists in this blog.

Sheuset said...

So, what is the correct way to ask what he was intending? You've posted similar things before, but I'm never really sure what is best. It seems like asking if she has a disability is insulting, particularly if she didn't have one. I know "is she broken?" doesn't do it, but it just seems like there isn't a good way.

I guess asking where the kid can hear is wrong, period.

Can anyone enlighten me?

Jamie Lea said...

Sheuset: I don't mean to sound rude, but why would someone need to ask? It seems a bit intrusive unless there is a legitimate reason for needing that information.

Rob Rummel-Hudson said...

Sheuset:

Well, first of all, I think you're absolutely right, the worst part was asking right in front of her, as if she couldn't hear or understand. And while that might seem like a no-shitter, it happens a LOT. Shamefully, we've been guilty of talking about her in front of her like that before, too, especially when she was younger.

I guess if I had been able to respond to him, I would have simply asked why he was asking. I think there's a weird sense of entitlement in our society where people feel like they deserve to know whatever they want about anyone. Pregnant women get a lot of these kinds of questions, too, I suspect.

If someone has a burning need to know, I don't think asking in terms of "Does she have a disability?" is the worst thing a person could ask. Indelicate, perhaps, but not nearly so bad as "What's wrong with her?"

The thing is, would he have asked if she was in a wheelchair, or had a white cane, or showed the symptoms of Down syndrome in her facial features? For kids like Schuyler who don't clearly show their disability in their appearance, I can understand where the question comes from. But I think before someone asks a question like that, they might want to anticipate what the answer might be.

Does any of that make sense?

Sarah @ Bend it Like Becker said...

What a nosey douchebag!!!!!

I cannot tell you how much I adore this story. Your closing TB/holiday statement had me chortling out loud at work.

Bravo to you!!!!

Laura D said...

Even better than your advocacy is self-advocacy and learning that sometimes others' opinions of us Simply. Don't. Matter. Go Schuyler. You are my hero as well.

courtney_marie_fedorchek said...

This was a great post! It terrible how some people can be! Just because children with ASD are not visibly physically disabled people don’t always know how to properly act. It’s great that there are parents like you out there!

Rob Rummel-Hudson said...

Thanks. But one small point of clarification: Schuyler is not autistic.

Stacie said...

LOL - you dropped the ball (for the record I drop it too) - she didn't:-)

Fiona said...

I love, love, love this!

I hope when times are rough you can remember moments like these and trust that Schuyler will be alright.

Kat Haeske said...

This is always a difficult situation.
How do you ask correctly?

First of all: I love it. That was a perfect response.
Not because he asked, but the way he did it.

But:
What is the right way to ask.
As someone, who prefers asking, since I have a hidden disability as well, but one much less obvious, than Schuylers, I care to know. I would ask, because in a way, we are sisters, trying to get by in a world that at the same time asks too much and too little of us.
And he had to ask you, because sure as hell, he wouldn´t have understood Schuyler. It´s not that she can´t be understood, but from what you post, if it hits you unprepared, you stand there completely dumbfounded, trying to make your brain understand what she says.
And as a non-native speaker of English, it has happened to me more than once with native speakers, those who know her accent understand. The rest.. doesn´t.
(Ask a German about Bavarian dialects to get a good idea of that)

Would it have been less rude, if he had asked you, and then included her, by recognizing her, and her presence, perhaps by apologizing, for not adressing her and upfront saying, he´s afraid, he wouldn´t understand her answer?

In the end, that IS the problem, isn´t it? not that he asked, but that he excluded her from a world, he and you obviously belong to.

Sometimes, there is no right way to ask. But there obviously is a right way to answer.

NRenee said...

Awesome communication skills, Schuyler--double thumbs UP to you!

(and your dad didn't drop the ball at all...he's just raised you to be the confident girl that you are)

inkyed said...

Rob, you didn't drop the ball, you didn't need to do anything because this little girl of yours is a 'big girl' and took care of the situation without you.
You actually empowered her, you took a breath, a pause, you stepped back...
and she stepped up.
Yikes on having a 'big girl'... breathe in... breathe out... repeat...

Mike and Christie said...

Oh have we ever had idiotic statements made to us. My very favorite... I was limping, because of a bad back. Sarah had just had a revision done on her amputated leg and was on crutches with only one leg showing, Erika was in a wheel chair because she had outgrown both of her prosthetics and didn't have the new ones yet.... So we are at a restaurant and this guy walks up with the greatest of sympathy.... "Was it an accident?"
We all looked at each other and I said, "No sir, we are like this on purpose!" And then we all burst out laughing. Poor guy. :)

Unknown said...

Hello. I wonder if you realize how often I come back to this one entry. It gives me such strength and hope and reminds me that my husband and I aren't in this alone -- our daughter is right here with us, facing her daily struggles with a much stronger attitude most of the time than I think either her dad or I possess even together. After all, it is HER life. It's too easy to forget that sometimes and we try to make her life OUR "problem." This reminds me that we don't need to hold her hand and baby her every step of the way. She is quite capable of walking upright and on her own terms much of the time. Thanks, Schuyler, for being such a great role model... for us PARENTS.! :)

-- karhill54