Sunday, December 02, 2007

The Mask

Beautifully dressed, well groomed, vacant smile. She sat, where directed by staff, looking straight ahead, completely unengaged with the world. I spoke to her and she looked at me, listlessly, without responding. "OK," I thought, "this woman has a fairly significant disability." Others arrived and were chatting and arranging themselves in the room. It was another day of workshops for people with disabilities, this one on abuse prevention.

We began. The workshop, though on a serious topic, is designed to be a lot of fun and filled with laughter. People aren't afraid of learning if they are having fun. Suddenly I notice her laughing, right on time, right on cue. "Hey," I think, "there is someone in there." I watch her. Her Down Syndrome, so noticible only moments ago, is receding and her personality is ascending. Now she covers her face with her hands and laughs heartily.

I ask her to come up for a role play. She's up in a flash. The role play involes her demonstrating how close it is for a stranger to come ... it's all about boundaries. She learns to assert herself strongly and loudly. She loves the attention and she's loving learning. At break chat with her and she tells me about her family and her interests - the list is long. She loves her family and is well loved by them. She even makes jokes about her MU ... ther.

Later, after lunch, I see her sitting in the lobby of the hotel the event is being held in. Her Down Syndrome mask is back on. Hotel guests walk by, stare, then look away pity (or fear or revulsion) in their eyes. No one, that's NO ONE responds to her neutrally. Everyone sees her disability, everyone sees the result of the extra gene, everyone has a reaction.

But she is immune to them. Hiding behind the mask is a vibrant woman in disguise. They'll never know, never realize.

Now, there's the pity.


Jessica said...

You are so right! There IS the pity. After raising my daughter with Ds for 7 years, there is one thing I know for sure-I am LUCKY and BLESSED to have her in my life. Sometimes I feel like I won the lottery. Those people in the hotel lobby will never know that and if I told them, they'd think I was nuts. I used to get sad when a pregnany woman would pass my my daughter and I ans get a panicked look on her face. Now I find it slightly amusing. You don't know what you don't know, as they say. So, I try not to hold to many grudges against people who are scared, frightened, and uneducated about DS.Thanks for your post. Check out for some truly inspiring faces and stories.

lina said...

So sad for them to never see an amazing person for who she is! Talk about missing out in life!

Belinda said...

Don't you think that is true of so many of us, with visible disabilities or not? Scratch the surface and we find the glory of God in each person.

But I too, have seen that mask on people with disabilities, particularly those who are fresh from institutions. It's almost a persona that is assumed. I look into people's eyes and the jig is up. I know that they are in there!

Laura(southernxyl) said...

When I was little my family used to go to the city once a year for Christmas shopping. I remember crossing the street once with my mom holding my hand and seeing a dwarf cross the street toward us. Never saw anyone like that in the small town I grew up in. My mom told me not to stare. I didn't realize I was staring but I stopped immediately.

As that little child, I interpreted this to mean "don't look at people who are different" and wanting to be a well-mannered girl, I didn't.

Eventually I figured out that it's pretty damn rude to glance at a person and then immediately look away, as if they're just too painful to look at, so I decided to look at people in wheelchairs, etc., until I made eye contact and then smile and say hi.

It is the very rare person who will smile and say hi back.

I have no expectations as to how a visibly disabled person "ought" to act, and I don't base my friendly actions on the feedback I get but rather on the way I think I ought to act.

But for people who glance and then look away, maybe they're still misinterpreting the "don't stare" they got as children, or maybe they stopped trying to interact b/c of never getting positive feedback. It's not very nice. Don't know what to do about it.

Lisa b said...

Dave this is beautiful!

A mom said...

"It is the very rare person who
will smile and say hi back."

This is going to sound harsh, but is not intended to be hurtful. It's just a different perspective.

Laura, do you smile and say hi to every person you pass? Probably not. Those using wheelchairs know that, too, and see your greeting (although well-intentioned)as condescension. Bottom line, treat those with disabilities exactly as you would treat one without a disability. Your notion of "how you ought to act" is a result of your own need to feel good about yourself. The person using a wheelchair doesn't appreciate being used for that, which is why you're not getting the response you seek.

Laura(southernxyl) said...

A mom, actually, yes I do smile and say hi to everyone I pass. If people choose to view this as condescending, I can't help it. If I start worrying about how every little well-intentioned thing I do might be viewed like this or like that I'd shut right down and someone would find fault with that too.

Greeting people with a smile is normal behavior around here. Maybe it's a southern thing.