Wednesday, August 11, 2010

IAQCWMCDTYVM Syndrome

Mother was old, but strong old. Daughter was well past middle age and gracefully so. They gave me such hope. Real, down deep, personal hope. You see, I am never comfortable when being stared at. And yet, I've been stared at all my life. First just for being ginormously fat, second for being fat in a wheelchair. It bugs me. It irks me. It pisses me off. And if I told the absolute truth, it hurts me, a little bit, every time. I grit my teeth, I speak up - stop staring it's rude, and of course, internally, I hurt myself a little.

We are on vacation and staying at a lovely hotel in Gravenhurst. Mike and his family have a suite as do Joe and I. We start our morning by meeting in the lobby area where there is a hot, free, breakfast. I hadn't noticed mother and daughter at first as I pulled in to the table. I never look at people when arriving in a room. I wait after I've splashed into the social pool until the ripples of stares and comments die down. So when I looked up, I noticed that I wasn't the only person being stared at ... so I followed the gaze and found a woman dignified and gray, sitting at a table with her elderly mother. She had Down Syndrome, her mother had 'I Am Quite Comfortable With My Child's Difference Thank You Very Much Syndrome' otherwise known as IAQCWMCDTYVM Syndrome.

They had breakfast and chatted quietly with each other. I wondered, as I always do in these moments, if mother had any inkling of the quiet loving bond that would have them sharing time and space years later, when the child was born. But what struck me was the incredible quiet dignity that they carried themselves with. They knew of the stares and managed, like I have never done, to rise completely above both the intent and the inspiration for the stares. Their dignity was like a force field that had starers glance away embarrassed at their own actions. Like suddenly finding you have snot on your shirt when greeting the Queen.

I knew that years of hurt feelings brought them to this place of grace. I knew that stares once penetrated and hurt both, for different reasons. But here they were noticed and then in studied determination, not noticed. I want what they had. Grace and dignity, poise and composure - a force field of personal strength and integrity. I want that. Please can I have it? I'd like it wrapped as a gift but I think it can't be bought, it has to be earned through endurance.

Though I did not, myself stare, we did notice each other, mother and daughter and I. We nodded. Me from my island of difference. They from theirs. On their way out they stopped and said to Mike and Marissa: you have a lovely family. Their words of praise brought grins to all at the table. Mike said to mother, 'You do too.' She smiled and nodded, tears forming in her eyes. She took the compliment, tucked it in her purse and took it back to her room.

I'm guessing they're saving it until, in a weak moment should they still have them, they need it.

14 comments:

theknapper said...

I'm touched again by your observations and how you connect with folks you encounter.

Anonymous said...

I love that syndrome and am fairly certain my parents are afflicted. I recently met up with both them and my youngest sister for breakfast in a restaurant in northern Ontario. It is rare that they get somewhere before I do, but on this morning, it happened and it made me remember that having breakfast out is different for us and that we're seen differently when we're out of town (the cocoon). This isn't necessarily a bad thing. I walked in and could hear my sister belting out a stunning rendition of one of Raffi's tunes keeping perfect beat by rocking in her chair. Then, I could see it, the majority of the patrons were glued on their table. Yet, my parents are so proud of her singing aptitude and her new-found confidence that it didn't matter. My dad just tipped his newspaper down briefly and smiled at her. My mom continued gently rubbing the back of my sister's hand and scanning the menu. I thought that they didn't even see it, the stares of those around them, and didn't mention it for fear of ruining this peaceful scene. Yet, when I read this, I just think the years of fighting for her, the years of advocacy didn't change everyone intended, but it changed them. They are so very comfortable and I'm so very relieved that they can just enjoy her now and let others watch.

P.S.- As for people staring at you b/c of your size, Dave, I'm sorry you feel that way. Your greatness just required more space to grow and flourish. I wish you could hold onto some of the confidence that you exuded in one of your training sessions. I'm a chubby girl and likely spend most moments in training pulling at my shirt or planning my next new diet. However, one day you mentioned having get-togethers of some sort for larger people and that struck a huge cord with me. I couldn't believe how confident one would have to be to embrace being on the bigger side. You mightn't always feel it, but your propensity for giving a different perspective about these matters reveals a brave soul.

rickismom said...

The big question for me is HOW do I get my daughter (age almost 16, has Down syndrome)to that place of not caring about the stares? She has a lot of confidence, and is constantly telling others not to stare at her. But the will also scowl at little two year olds who are simply looking her way. (And once she does that, EVERYONE is looking at her, due to her behavior).
RE Overweight. I am currently losing weight (because I feel better that way physically), and I would not be able to do it if I had not reached a point of believing in my own worth. A few days ago I was urging a close relative to join me in my morning walk, and she (who is also overweight, as much as I once was...)said she can't because she can't take the stares. I was shaken that this would lead her to not try an activity that promised to be fun, energizing, and healthy. Sometimes people stare at me too, but I aqm not going to let fear of that rule my life!

rickismom said...

PS. Regarding anonymous's post.
I am happy with my daughter and have no trouble with her D.S., but I wouldn't let her belt out a song in a resteraunt. People are paying money for a nice evening need not be acosted with noise. IF a child does something off the wall, has a meltdown. etc, yes, other pastrons should understand. But to encourage behavior that is disturbing others (by stroking her hand, etc)is no big mitzvah (good deed) in my eyes. I would not tolerate such behavor from my other children, why should I tolerate it in Ricki? If I would, am I not sending her a message that she is less resposible for her actions, and less capable of controlling them than my other children?

Anonymous said...

Oh my goodness, rickismom, I appreciate your sentiment, but am pretty much certain that you missed the point. When I say belting out a song in relation to her, it was more in awe that I could hear her say anything in public. Besides, beyond the stares, we get far more compliments about her lovely voice. We struggled for years to get to the point where she could actually enjoy a breakfast out. As for the stroking of the hand, being completely blind, she seems to feel quite lost in strange places, so she will always have someone there to hold her hand. Even if she had done something inappropriate, we wouldn't hold back on letting her know that she can trust that someone will be there for her. So saddened that you reduced my post to a critique on how my parents mishandled their morning out. I like sharing here, but your comment will likely make me leary now. It was a lovely time and I'll try not to give your position any thought beyond this.

Rachel Cohen-Rottenberg said...

I think you're right, Dave--that kind of grace and strength is hard won, through many tears.

I've noticed that as I get older, I spend more time looking at the world in all its incredible, complex beauty, which diverts my attention from how people are looking at me. I am still extremely sensitive to the responses of others, but I'm coming to feel that being part of the world means being a part of everything that exists, and so I see more and more clearly that the pettiness of human beings is just a tiny part of that world. It's all a work in progress, though. I hope I live long enough to reach the state of consciousness of the woman you describe. I think that would be the crowning achievement of my life.

Rachel Cohen-Rottenberg said...

P.S. Anonymous, I love the story about your sister. Please keep sharing here.

liz said...

I love this post.

Becca said...

IAQCWMCDTYVM Syndrome - LOVE IT! While my daughter (who has Down syndrome) is still only 4 years old, we've been fortunate enough to either have been blind to or not have been subject at all to any stares in public, other than those from people who have similar stories to tell. We are all stalkers in the Ds community, I think, and if we see someone else out there, we'll suddenly lose our voices that would allow us to approach them and we'll stare, forgetting that they may misconstrue our attentions.

I still am in awe at the observations you make of the world around you, and how carefully you read people wherever you go. Your posts are wonderful, touching, thought-provoking. Thank you.

Anonymous said...

AS always I love when you write like this, it's just beautiful. Please don't ever stop.
To anonymous, what a gorgeous response; I too feel Daves heart just needed a bigger space.....:)
You know Dave, I had surgery to be thinner, sure didn't make me happier.....just smaller.

FridaWrites said...

I had a similar incident yesterday. The hotel breakfast room, felt like an animal in the zoo. Heads swiveled, people went slack-jawed, they were in suspended animation. Finally snapped at a few people about it. Felt like pulling up to one table and telling them I'd join them as long as they wanted to indulge them until they were done. I mean, what the heck was that interesting about my getting eggs and biscuit? But I didn't.

Usually I do the same as you, avoid looking around the room initially.

Other places are not like that; did not have that experience in another state the previous week.

Lisa G. said...

Dave,
If you get a chance read the posting "Ruth Esther" on the blog
http://geneticenhancement.blogspot.com I think you will enjoy it!

Lisa

Moose said...

It's not just the stares. It's that being fat and disabled means that I'm somehow unable to hear them, too.

"oh my god, look at the size of her. Do you believe what she's EATING?"

or my favorite. "I'd kill myself before I got that fat. Hey, did I tell you about my new diet?"

The really 'funny' thing about this is that I know ASL. Once, back when I was more fluent, I caught a bunch of deaf people saying the same thing.

rickismom said...

OK, annonymous, I must say that you added a lot of pertinent informsation, that was left out the first time.