Tuesday, October 30, 2012

Because "love" should be a verb and "retard" should never be a noun.



The room was filled with people. Seats all forward and facing the hanging screen that displayed the image from the LCD player. A youngish man stood at the front of the room, white coat starched to perfection, a tie that most certainly had the name of some fancy designer on the back, and shoes that appeared to be spit shined. Even though he lacked the grey hair of the endowed professors, he had the look that holds the attention of medical colleagues. Professionalism personified.

But beyond that, he knew what he was talking about, too. His slides were well done and cited all of the resources for the topic of discussion. For the majority of the presentation he wasn't even looking at the screen at all; he knew his stuff that well. And he was cool. No shaking hands or nervous throat clearing. Just one youngish doctor-dude standing at the front of the room with closely clipped nails gripped around a laser pointer. And this doctor-dude? He knew his stuff.

I, being a person who is enamored by excellent public speakers, felt myself wavering between actually listening to what he was teaching and how he was doing it. The clean slides with the clear diagrams. The cadence of his voice and the way he interacted with the audience. And then there was his chosen topic--an area that happened to be his expertise as well as one that is high yield for all of us. Not only was I learning something, I was enjoying it at the same time.

But then something happened. He turned a slide and things weren't configured as he'd expected. Of course, he was still cool as a fan. After trying to talk through the disjointed words and images any way, finally he stopped and knitted his brow in frustration. Then he said this:

"Sorry about that, guys. I prepared this on a Mac and these PCs can be so retarded when it comes to going between PowerPoint for Mac and Windows."

A few people chuckled in acknowledgment. The talk had been so good up until that point that no one seemed bothered.

"I'll move past that slide," he said with a shrug of his shoulders, "Sorry -- I should have checked compatibility before. I'm such a retard sometimes."

A ripple of gentle chuckles went through the room. And that was that.

The rest of his slides were fine, I guess, because I don't remember much else. Everything after that for me was just white noise.

In 2009, I helped lead a writing workshop with a group of colleagues at the Society of General Internal Medicine (SGIM) national meeting. The session was called "Writing and the Art of Medicine: From Personal Reflection to Publication" and included a breakout session where we actually spent time writing narratives. It was really well attended and I remember being pleasantly surprised by the number of people sitting at the round table with me during our breakout.

The task was simple. "I will give you a sheet of paper. You will write -- longhand -- for ten minutes about a pivotal moment or critical incident you've experienced that has taught you, moved you, or simply made you think. We will then share a few of the ones you've written." Straightforward enough, yes?

I recall that there were many beautifully written pieces. Important topics that we all, as physicians and medical students, could feel resonating in our souls. But there is only one narrative that I remember in full detail. Only one. The story was simple, really. It was written by a young woman who was a resident at the time and she'd spent her ten minutes describing two very clear images.

The first was her interactions with her nephew, to whom she appeared to be very, very close. As it turns out, he was born with an additional copy of chromosome #21 which most people recognize when they see. That's because trisomy 21 is the chromosomal abnormality responsible for Down Syndrome. Yes. Her nephew had some developmental delays and some mild to moderate mental retardation. But that's not what she described. Instead she painted a picture for us of him running recklessly on the front lawn chasing bubbles. Of him tackling her and covering her with his sloppy kisses. And of how much he loved classical music. So much so that whenever he heard it, he'd stop, close his eyes, and wave his fingers like a maestro.

Then she went to another scenario. Her in the hospital working on a ward team. The lab system had gone down for the day and her resident declared the system "retarded." Her co-intern had left his stethoscope on another floor and dubbed himself "a retard" for doing so. And the list went on. According to her, it had become the slang word of the month for that team. Anything imperfect or dysfunctional was referred to as "retarded." And the funny medical student with his perfect comic timing? He was "such a retard." But in the nicest, most endearing way, of course.

So she read her words in her quiet voice and I swear to you that you could have heard a pin drop. And at the end she simply told us that she never got around to saying how much that word stung each time she heard it from their mouths. How awful it made her feel to know that her nephew's life would be just a little bit harder because of that word. I never, ever forgot that.

I will admit that before that fateful moment in 2009, I'd never really "heard" that word. Surely I'd heard it at some point, but it had never created a nails-on-chalkboard effect for me or a visceral response in me either. But her words? They opened my eyes to something that I'd never thought about. An aspect of "the other side" that our patients and their families and their friends experience that even the ones that are supposed to be allies have completely overlooked.

Sigh.

So that man with his perfect PowerPoint presentation and his spectacularly white coat should have been an ally. But he hadn't heard that word either. And from the response he got from everyone in the room, it was business as usual. Which tells me that the majority sitting under his voice hadn't really learned to "hear" the word "retard" like that young resident writer had taught our breakout group to hear it that day.

(photo courtesy of Elizabeth Aquino)


My friend Elizabeth recently posted a photograph of her son, Oliver, speaking at "No Name-Calling Week" in 2010 at his school. I have posted that image above because seeing his young face holding that sign immediately brought me to tears. Just look at him. So brave. . .with that microphone in his face educating what was probably the entire student body. His sister, Sophie, has some special needs and also a severe form of epilepsy. But just like that sweet boy who was chasing bubbles, conducting music with this two index fingers, and freely giving out juicy kisses, there is more to Sophie than her disabilities. So, so much more.

See? Oliver knows that for sure. He lives it and breathes it. So he held that sign and shared his testimony because, for him and Sophie and his brother and his mother and every person who knows and loves Sophie, those words hit like a fist. I am thankful for him and for that picture because now, it hits like a fist for me, too.

Maybe from now on, it will for you, too.

I would make this a jumping point to reference that woman Ann Coulter who sent that tweet during the last presidential debate. You know -- the one that commended Governor Romney for going easy on "the retard." Or being polite or whatever the hell she said. Yeah. I would start unpacking about all of that, but some part of me wants to believe that perhaps she had not yet "heard" this word either.

That or I just don't have the energy to waste on that.

After that lecture, I pulled that colleague aside. I told him about the little boy with the bubbles and paid that story forward on behalf of his aunt. Even though I didn't know Elizabeth and her family back then, I suppose I paid it forward for them, too. In my least judging voice, I shared how that story had opened my eyes. I told him how much I had enjoyed his talk but that his use of the word "retarded" and then "retard" was hurtful and probably not the very best choice.

And you know what? That highly professional physician speaker put his hand on his chest and apologized. He didn't even realize that he'd said that word. And especially felt mortified that he'd said it not once but twice. And I said, "I totally understand because I hadn't really heard that word like that either but now that I do, it hurts to hear." He got it and thanked me. And I thanked him right back for being so understanding.

Today, I say thank you to that young woman whose first name -- Thalia -- I still remember. I have no idea where she is, but she changed me that day. I also say thank you to Oliver and Elizabeth, too. I am grateful to them for helping me to see that if we are going to commit ourselves to making love a verb, then retard should never be a noun.

Or a joke.

From here forward, I hope you'll hear that word differently, too.

That's all I've got for today.

***
Happy Tuesday.

Well. Google is an amazing thing, y'all. I found a piece of Thalia's writing from an essay contest she won as a medical student in 2003. Read it here. It also turns out that Google can also help you find out where someone is now.  This remarkable young woman is now a clinician educator on the Internal Medicine faculty at one of the Harvard hospitals. No surprise to hear that! I hope she's still telling that story. . . 

36 comments:

  1. Guess what? This is my new favorite post!

    Thank you.

    I love you.
    Xoxo, Biz

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    1. Hey Bumble Bee!

      You know how much I love you, too. Thanks for always reading my tangential thoughts. . .

      xo,

      Miz

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  2. "Retard" has become one of those socially ingrained descripters that has grown acceptable over the years with very little, if any, thought to its derogitory nature. Same goes for "Jewing" and "Gypping." I don't think people intend to offend when they use certain words; they simply don't know better. But knowledge is power! Know better; do better.

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  3. What more can I say? I'm astounded that you've described something so perfectly and done it from your own position of what I might call "power" in the medical world. My gratitude spills over -- I don't cry easily, but I'm weeping, now, in gratitude. Thank you for this, over and over and over.

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  4. Thank you for speaking out and bringing it to the speaker's attention. Not everyone would be so brave.

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    1. Hi Hannah. I knew that he was a nice guy and that he valued professionalism and people. I really could. His response didn't surprise me one bit. I think that, just like me, he just never heard the word as hurtful until then. I'm sure that I'd accidentally used that word before 2009, too.

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  5. Your writing always touches me, but this one, and its nod to Elizabeth and her kids, got to me even more as my youngest sister, who died a couple of years ago, had Downe's Syndrome. She was "high functioning" which, in some ways made living in our society even harder for her because she knew enough to know what she didn't know and would probably never learn and some days that just broke her heart. And it was a big heart. There's something about Downe's people that brings their emotions to the forefront and puts the gatekeeper on permanent break, so that they have a way of enveloping those close to them with love. I still miss her a lot.

    Thanks for speaking up in you daily life and for this post that is caring and respectful on so many levels. x0 N2

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    1. Wow. This reminds me of the person with Down Syndrome who replied to Ann Coulter in that open letter. A person high-functioning enough to be offended on their own behalf. That's a whole different perspective, you know? Being offended on their OWN behalf. Wow.

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  6. Ahhhh, I love this piece. I knew Elizabeth would be pleased. I read Thalia's piece as well, and it too, is beautifully written. Was it Maya Angelou who said, "When we know better, we do better"? Thank you for making us know better.

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    1. Yes, Tounces. That was indeed Maya Angelou who said that. I love knowing that you read. I love you so much for that. It feels just like having your mom at your 5th grade chorus recital. Just like that.

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  7. I learned the power of that word in its various forms from a very young age, in a context where it was still used (nearly 40 years ago, mind you) as a clinical descriptor. It was when I heard my father telling the story of how a bunch of educated doctors were telling him that his daughter would be retarded. Obviously they were very much wrong, as here I am writing this comment... I, too, might have taken that speaker aside and explained why his choice of words was problematic. It's sad when words like "retarded" are used so thoughtlessly (I heard my share of it and its relatives from peers while growing up, too); it's also an unfortunate commentary on the state of our world. It's always good to know there are people like you out there working so hard to change it.

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    1. Hey medrecgal. We're all works in progress, you know? I know for certain that I used to say the word "retarded" in jest, not "hearing" it. I just think we all need to keep talking to each other and getting each other to think. We're all works in progress. I know I am.

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  8. I came and visited your blog through the link on Elizabeth's blog. I commend you for writing such a heartfelt piece about this topic. I am the mother of a developmentally delayed 2.5 year old and am currently a 4th year pharmacy student, now on clinical rotations. I cannot tell you how many times I have heard the word "retard" used in such a casual manner from doctors and pharmacist and nurses. My heart sinks every time I hear the word used and yet I feel powerless to stop it - after all, I'm the lowest on the totem pole of any team I round or work with. I feel like health professionals have more of an obligation than the general public to be educated and aware of the impact of not just the word "retard" but of all language. Thank you for speaking out and thank you for writing.

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    1. tomandbeth, any friend of elizabeth's is a friend of mine. See the thing is. . .reading Elizabeth's blog has taught me SO much. I always tell her that she makes me a better doctor--and I mean that. Your perspective about doctors and health care professionals having a higher obligation is probably true. . .but remember. . all are still human. We all need some gentle redirection. Most don't mean it to be hurtful. I know that for sure.

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  9. Brilliant! Just brilliant. I popped over from Elizabeth's blog and want to add you to our bloglist at BLOOM. I am trying to get The New York Times to update its style guide so that its common use of the descriptor "retarded" is replaced with intellectual or mental disability or something more neutral:

    http://bloom-parentingkidswithdisabilities.blogspot.ca/2012/10/letter-to-editor.html

    I'd love to send you copies of our BLOOM magazine if you send me your snail-mail address to lkinross@hollandbloorview.ca

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    1. I think I've visited you before through one of Elizabeth's links. I will email you my snail mail address. :)

      P.S. I love the word "brilliant." I think I will use it more.

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  10. What a beautifully written lesson on love. I'm one of those who get the "fingernails on chalkboard" feeling every time someone uses the word "retard", but don't always speak up. Now I'm going to try more often.

    I read Thalia's essay and printed it out to place in my treasured book, The Tibetan Book of Living and Dying. This book teaches us to nurture the dying person just as the nurse, Cathy, does with Thalia's mother. Sweet tears came to my eyes as I read this essay.

    Thank you for your, and Thalia's, compassionate words.

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    1. Yeah. I think I need to find that Thalia. She really struck me that day. I think I may have emailed her once in 2010. Thanks for taking the time to read all of this stuff, as always, lulumarie.

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  11. Had me crying! I am currently a preschool teacher, but for MANY years I worked with kids and adults with many difernt abliities. That word is not allowed at my house and I do politley tell people how offensive and hurtful it is when hearing it in public. Loved the story you told. Thanks for bringing this out ion the open.

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    1. Thank you for stopping by and reading.

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  12. I love the way you described 'hearing' that word for the first time. Instead of vilifying those who use it, having the perspective that you do allows us to gently and without animosity educate others about its power and help them to 'hear' it for the first time. Thank you so much for this and thank you for being a medical professional who sees patients as humans.

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    1. I'm so glad you pointed that out. I don't want people to think I'm some perfect person who doesn't screw up. I do. I know I probably said this before. Or at least didn't mind when someone else did.

      Thank you so very much for reading.

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  13. Thank you, thank you, thank you! I too find that to be an offensive word. I have taught my children that it should never be said and I, like you, politely tell others how unkind it is. Love this post:-)

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    1. Thank you so much for these kind words, Heather. I really appreciate you taking the time to read my words and, of course, you sharing your feelings. 'preciate you!

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  14. This is an incredible post. I am a friend of Elizabeth's. I have met Oliver and Sophie and Henry. In fact I wrote about it here http://treesfam.blogspot.com/2010/06/two-mothers-meet-ultimate-mother.html
    No doubt you are a gift. I am glad you are practicing, and writing this blog. I will be back.

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    1. Hi Theresa. I will be going straight to read that post for sure. I appreciate you reading and commenting. It means a lot.

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  15. Well, this was beautiful and perfect and timely. I read Thalia's piece too and it broke my heart.
    You constantly amaze me.
    xo

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    1. Hi my friend. Thank you, as always, for your support and kind words. It really does encourage me, you know. It does.

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  16. HI, Hopping over to you via Elizabeth as well (for the first, but certainly not the last time). We are a host family for Operation House Call http://www.mdsc.org/infojustforyou/OperationHouseCall.cfm , and I'm always on the lookout for written material to give our med student visitors to take home with them. What a gem this is; may I have your permission to pass it on to them?
    Thanks!
    Debbie

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    1. Hi Debbie. Of course, you can share any of these posts with medical students. A lot of what I write is with students in mind. I always want them to know that we, too, are second guessing ourselves and ruminating over things.

      Very best,

      Kimberly

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  17. Thank you for your beautiful words: Letting you know that this post is now in my October Round-Up of What I Loved on OTHER People's Blogs: http://www.squashedmom.com/2012/10/october-round-up.html

    found you via the lovely Elizabeth Aquino

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    1. Awww! Thanks Varda. I appreciate that and will be visiting your blog! And yes, Elizabeth is very lovely.

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  18. Thank You. Your posts always go right to the heart.

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  19. Absolutely wonderful post. I've been a long time lurker as you call it and have found so many lessons and words of encouragement to carry me through the past 6 months of intern year. The most moving as a minority at a majority institution are your posts on leaving the self deprecation and hate to the experts and not doing it to oneself. This post also has resonated deeply. As I am a firm believer that most people are good but don't necessarily think or hear what they are saying and how it can be perceived to others. I am also native american by heritage and feel that that part of me is invisible and overlooked often. In the spirit of your post I feel I must be like that resident and share my own thoughts given the recent controversy regarding the use of the name redskins for the football team. It honestly is truly shocking to me that in 2013 this is acceptable to the vast majority of people and not only acceptable but fought for with vigor and enthusiasm as "tradition" and a "right". Redskin is first recorded in the late 17th century and was applied to the Algonquian peoples generally, but specifically to the Delaware (who lived in what is now southern New York State and New York City, New Jersey, and eastern Pennsylvania). Being that I am from the Nanticoke tribe of Delaware this especially hits home. This term was throughout the years as is often the case became perverted and now is widely accepted as a derogatory and pejorative word for indigenous people. It was used during colonization to represent the scalping and killing of indigenous people with money given in exchange for a "red skin" or a blood stained scalp. Thus this term is very much the "R" word similar to the "N" word. Therefore you can imagine the feelings evoked and the stigma for indigenous children felt when not only is this common place and used frequently in grade school as is the term "retard", but when this term is widely celebrated via the NFL, the media and society as a whole. I am so proud of our President for speaking out about this and hope others take a moment of pause to think and truly hear what this word symbolizes and how it is potentially received by Indigenous people. Thank you so much for your inspiring posts and I apologize for the length of my post.

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

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