Saturday, May 4, 2013

I'm right here.



A group of young adults were gathered in a local pub for dinner. Air filled with a mixture of wafting plumes of cigarette smoke, hoppy beers, and music just loud enough to count as ambient noise. It was a perfect place for these friends--easily a dozen of them--full of that carefree exuberance you see in twenty-somethings. Their laughter was robust and their jokes unabridged. Not in that obnoxious way. Just in that way that says, "We're glad to be alive."

One seemed to be the life of the party. His hand motions were animated, his fingers splayed apart and almost exaggerated. He had the kind of smile that was so wide and full that you couldn't help but erupt into the same when you saw it. And perhaps this explained the energy at the table more than anything else.

A waitress who appeared to be close in age to them fluttered over to take their orders. She seemed mostly glad to be assigned to their table, almost as if she knew that infectious joy might catch the hem of her garment and ignite her with that same. She licked her finger and turned the page in the pad of paper in her hand. "Are ya'll ready to order now?"

The lively one answered first. "Yes! I don't know about them but I'm hungry like the wolf!" That made the group howl with laughter, maybe even like that metaphorical wolf.

The waitress glanced in the lively one's direction. Well, sort of. Something about him seemed to have caught her off guard. Her brow was furrowed and there was this awkward, forced quality to her expression. "Umm. . . that's. . . really funny, actually," she finally said. Although it isn't clear what she meant by that. She released a nervous chuckle and then addressed the entire table, "Has everyone decided on what they'll be having this evening?"

They all seemed to prop open their menus as if on cue. The waitress pulled the Bic pen from behind her ear and raised her eyebrows at the gentleman sitting to her immediate left. He got the message and started the litany of orders in this noisy pub. Still intermingled with laughter and jokes. The kind that says, "We're glad to be alive."

"Fish and chips. But only if you have malt vinegar. Because having fish and chips without malt vinegar should be a crime, chile!" (laughter)

"Give me the juiciest, greasiest all-beef burger you have. How would I like it cooked? Cooked? Bring it out here right now, baby, because it's already overcooked as we speak. Rare. That is, I want that sucka moo-ing and fighting me between two buns." (more laughter)

"Do you have any kind of salad? SIKE! That's a joke. Give me the bangers and mash. And a plate of onion rings." (laughter and high fives)

And all of this went on and on in a clockwise fashion around that table. All with witty one-liners, back slaps, and fun. Especially from that lively one. He seemed to have this infectious enthusiasm that made everyone at that table just a little bit happier.

"Myyy turn," he announced while waving his hand high over his head. The waitress offered him that same layered expression. She cocked her head sideways and sort of jutted her bottom lip out. Then she shifted her eyes away from the lively one to the young woman sitting directly beside him. "So cute," she said in that way you describe baby koala bears. "Will you be ordering for him, honey?"

And just like that, the mood changed. That easygoing happiness came screeching to a halt as everyone sat there looking nervously at one another.

"IIII can. . . .I can order . . for myself."

"Oh, honey. I'm sure you can." She feigned confidence in him and nodded quickly at him -- just like people nod at babies taking their first steps. Cute for babies and koala bears, but patronizing and offensive for adults.

A hurt expression washed over him but she missed it. In a somber voice he told her,  "I have cerebral palsy and that's it. I can read, I can choose a meal, and I can order."

Like all things you see and hear repeatedly, once you got to know him, the less noticeable his speech impediment seemed. In fact, it was almost nonexistent after a while. I am willing to bet that those friends of his were so far beyond it that they didn't really pay much attention to it. All they saw was their friend.

But still.

His voice was no longer laced with that mischievous wit from before. Now he seemed more self conscious of his differences from the rest of his "normal" friends. The rhythmic crescendo-decrescendo of his affected speech and his slow hand movements now appeared more pronounced.

The waitress just stood there, still pointing her pen at that pad. Her face was frozen, mortified, but weirdly unapologetic. "My bad, I guess," she said with a tiny shrug. She glanced back at the other people sitting at the table with him, still not giving him the dignity of her eye contact.  "I was thinking he was---"

"I'm right here," he interjected, pointing two awkward fingers at his eyes and then gesturing back toward hers. "Right here. You can talk to. . .to me."

And that? That wasn't unusual for him. He'd spent his entire life navigating through these uncomfortable assumptions of what his motor disability meant. He'd learned to counter the unwarranted pity he always seemed to garner with humor. With those who had the chance to really get to know him, that coping skill served him well. But still. Time after time, he had to face moments like this one--unknowing people who reduced disabilities like his to these limping, slurring caricatures portrayed by stand-up comics--complete with super-slow, simpleminded mentation that, for him and many others affected by cerebral palsy, wasn't a component of his differences at all. At all.

But now that I think of it, even if it was, there would still be feelings. I'm pretty certain that those feelings could be hurt by daily insensitivities such as being regarded as invisible or even infantile.

And so, like always, that moment stung. Piercing like a million angry wasps all at once and embarrassing enough to make his face just as red.

"Everybody thinks I'm mentally retarded," he said softly. "Everyone, Dr. Manning. Nobody sees me as a regular person, a man."

This is what my patient told me right before telling me that story. Tears were rolling down his cheeks and he clumsily patted them with Kleenex. "I do," I finally replied.

"You're. . .a doooctor," he responded. "That's what you're supposed to say."

And I sat in silence because I wasn't sure whether or not there was any truth in that statement. I hoped not.

"What makes me sad is not my disability. What makes me sad is how people see my disability instead of me." He patted his chest for emphasis. "Me."

"That makes me sad, too."

"Everybody wants to feel valued," he said. "Everybody wants you to just see them and love them for who they are inside. Not the things you see on the outside."

Something about that simple truth made my eyes prickle with tears. He went on.

"Black, white, boy, girl, straight, gay, old, young---it don't matter. It's like I told that waitress, Dr. Manning. 'I'm right here.'" He made that same motion with his hands to his eyes again. "Right here."

And I just listened and nodded and took that all in. Because this was a good word. A really, really good word.

He asked me to share this with other people and I promised him that I would. He, too, writes and clapped his hands when I asked his permission to write about him on this blog. "As long as it ain't Perez Hilton," he said with that same sarcasm that had his friends laughing out loud. 

"Nope, " I responded.

"Okay. Then I'd like that. I'd like you to share my story and what I said."

"I promise I will."

"And Dr. Manning? Tell them not just for me with my cerebral palsy. But for you, too."

I stuck that on a mental post-it note in my head for later on because that? That word was as much about him as it was about everyone of us.

And no, I don't make this stuff up. And sure, I do use some literary license and change details because that's the right thing to do. But--I swear--I am always, always true to what I learned from the experience. Always.

That said, I described what I imagined when he told me that story at his bedside. His eloquent words painted a picture for me that I could see and feel. And honestly? The "literary license" was at a minimum this time because I was paying forward this important lesson he gave me permission to teach to others.

And this, my friends, is what Grady gave to me on a rainy day last week. A good word, a new insight, and an opportunity to remind myself of something we all spend our whole lives wanting. To matter. And to not have to tell people repeatedly that I'm right here.

Yeah.

***
Happy rainy Saturday-night.

Now playing on my mental iPod. . . . which, okay, is really a song about intimacy but I heard the song differently after thinking of this today. So get your minds from the gutter and listen to Miss Minnie Riperton as she reminds us to see inside each other (even if she had something else in mind.)



33 comments:

  1. I'm told I feel deeply -- both joy and sorrow -- and this post just about did me in. I am so glad this young man could unburden himself to a doctor like you. And how you summed up what you got from the exchange is so right on. You are just such a fine doctor. Sweet Jo

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    1. He was a remarkable human being. Or rather is. I was so moved by his story and felt honored to have been trusted with it.

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  2. "Everybody wants to feel valued," he said. "Everybody wants you to just see them and love them for who they are inside. Not the things you see on the outside."

    This did me in. I totally understand this and so many of us struggle to be seen even if we don't have a "noticeable" disability. I just love how he handled the situation and wanted to share this story with others. He's a strong person and would probably be a great motivational speaker. ;-)

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    1. Guess what, D? He actually does do motivational speaking. I'm not sure where but he told me that he does. We all thought the same thing, so that's when he shared that he speaks a lot. Such a cool guy.

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  3. This was a great post. Thank you for sharing his story.

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    1. Thank you for spending your Cinco de Mayo reading it! :)

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  4. I truly think that when humans cease to immediately judge others on all the things that man mentioned we will have taken another step towards evolving into more perfect beings. Is it possible? The more all of us speak out, the more possible it becomes.
    Good one, lady.

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    1. Love your new profile picture. You are one hot grandmaw. Wait. That's not the point of this, is it? Yes, yeah, I agree with all of that. Hugs to you, my dear.

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  5. oh my...we all matter. Going to make this my thought for the week...

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    1. A person's a person no matter how small.

      ~ Dr. Seuss

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  6. That was a great post! It was very eye-opening. Thank you so much for sharing!

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    1. . . .and thank YOU for reading, Madison.

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  7. I heard you. I heard him.

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    1. I'm so glad, Jill. You always do, though. So thanks for that.

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  8. I have a cousin with cerebral palsy so this really spoke to me. My cousin is turning 77 this year, the doctors told his parents to not expect him to live more than 5 years. He is confined to a wheel chair and has lots of trouble speaking. It hurts my heart to know that people are rude to others who have a disability. They are human just like the rest of us and deserve to be treated with respect!

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    1. Hey there, lady! Wow, did your cousin ever show them. And yes, every person deserves our respect, don't they?

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  9. Thank you Grady doctor...You, again, filled my heart and made me cry. If you ever see this wonderful young man again please thank him for letting you share his wisdom.

    with Gratitude and Hope,
    ~ Chris A ~

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    1. If I see him again, I promise I will, Chris. I always appreciate your kind thoughts.

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  10. From the deck of the Poop,
    This is o e of those, "just call me Snotty Jackson" ones. I will internalize this and try to see people inside rather than just concluding that what my eyes happen to see is what really is!!!!!
    Great piece of writing. I am sure this piece will help many of your readers and friends of your readers.
    PoopDeck

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    1. I love you, Dad. And I love that you are a part of our community of thinkers. Good ol' Poopdeck.

      xo, Kimberly

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  11. Thank you for sharing this moving story, and please thank your patient, if you see him again, for advocating for himself and others with disabilities. What I'd like to add to the discussion is that the behavior of the waiter would have been wrong and ignorant -- and indicative of our culture's dehumanization of disabled persons -- even if the person WAS cognitively disabled, or "mentally retarded" as the man with cerebral palsy stated.

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    1. You are so right, Elizabeth. I thought about you when talking to him. I thought about Sophie and how she and you would feel in such a situation. I believe that, in some way, you helped me to *see* him better. I am glad you commented because I really cared about what you'd think of this man's testimony.

      P.S. "mentally retarded" was his wording specifically. I recognize that this is not the preferred term. I hope that did not seem insensitive to share it as he spoke it.

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    2. It's so not insensitive -- even to use it in such a way, as that's not a slur like "retard" is. Thank you, again, for fostering this stimulating discussion on your blog! It's nice to see something that isn't "disability porn" which is what those of us in the disability world call the usual "inspirational" stuff that floats around the internet.

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  12. Thank you for sharing his story, in a way bringing his voice to a wider audience than he otherwise may have had. I was having a feeling sorry for myself Monday morning, thank you for snapping me out of that too :)

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    1. I hope you feel better, friend. Whatever it is, I hope you feel better soon.

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  13. I saw this article yesterday and immediately thought about this post: http://www.today.com/tech/internet-fame-painful-family-man-down-syndrome-6C9770501. Makes one realize we as a society have to do better. I know I will try to do my part.

    Then I remembered this video posted back in March, which is definitely a feel good story: http://www.youtube.com/watch?v=y6He0FWoFj0. The news feature is here: http://www.nbcnews.com/video/nightly-news/51281725.

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    1. Hey D, It's so hard to do better sometimes, isn't it? We're all works in progress but I believe that we can be changed in the twinkling of an eye by simple truths shared with us in the simplest of ways. That's how I felt when he shared his story with me. Thanks for reading. Really.

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  14. I am right here! I've experienced that feeling and cried many tears while reading this. Thanks to you for sharing this for the world to see.

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    1. Thanks for your perspective, Heather. I appreciate you weighing in on this.

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  15. This is beautiful -- thank you so much for this post!

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  16. One of my best friends is blind, has been since birth; however he was raised by his incredible family in New Orleans, who basically had the attitude of "Blindness? Sucks to be you" and tolerated nothing less than the best from him. As a result, he's fantastically intelligent (graduated cum laude from college), works full time and has for years, and lives alone. In fact the ONLY thing he can't do is...drive. Which makes him mad. (He always asks to borrow my car, but I refuse. I'm a terrible friend). Why am I telling you this? Because practically everywhere we go, people assume he's mentally retarded simply because of his looks (remind me to tell you the Target bathroom story sometime...) It's really frustrating, so I can definitely sympathize.

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  17. I wonder how the waitress would feel after reading this blog? Would she feel what we all felt? Would she understand the depth or shrug it off? Would she vow to change how she sees people who she perceives as different?

    If this guy has a blog, I'd love to read it as well! He seems like a hilarious personality like you Dr. Kim.

    Kudos to you for this post Each one...teach one. -Renee

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"Tell me something good. . . tell me that you like it, yeah." ~ Chaka Khan

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