Friday, July 17, 2009

The Stare as Defined by Pollyanna

The stare. You get it anywhere from any age. It is more overt with children, but furtive and broken up by those that think the act of prolonged ocular focus is impolite, but who cannot resist stealing successive glances anyway.

It doesn't matter how obvious or subtle the differences for your child (the staree) are, if they can be detected at all, whether physical, social, intellectual... attention will be attracted. Unavoidable.

It feels like a judgement, like an insult. We are offended by these stares and the bold among us have some zingers to fling at gawking children and adults alike. We feel justified and even righteous having flung such. We tell our disability-parent friends how we stood strong and shook our fists for the team.

Or we shrivel and retreat, possibly gelling in a young mind the fledgling idea that maybe differences are indeed not to be celebrated, not to be tolerated, not to be witnessed.

It's been established that I wear cheerily-tinted glasses - sometimes one pair on top of the other (orange or lime green, for rose is just not my style). If I could braid my short spiky hair on each side like Pollyanna, I would.

I cannot say when or why, but at some point, these affronts - these stares - turned into questions for me. Questions someone either is afraid to ask or doesn't know how to put words to. Eyes on my child use to bring to mind the sizzling sound of a branding iron on a livestock rump. But now I see the arc of the gaze as an outreached hand. I can take the hand or I can shove it back. If I fling it back with my zinger or with my huffy or hurt exit, one part of the 'question' can be answered: yes, parenting of differences makes you bitter and forgetful of what it was like before disability became a focus of your life.

It's hard to take the hand. For me it's easier with kids because they aren't debilitatingly embarrassed when caught in a stare - backpedaling is a decidedly grown up reaction. With kids I see their shoulders unhunch with relief that the topic has been opened when I ask "Oh, you seem really interested in Addie. She loves meeting new people. Let me introduce you and then you can ask us the questions you have." Either that opens the floodgates of inquisitiveness or the child very simply decides it's now OK to try and engage with Addie. Either way, the great divide has been rendered less great.

I have not forgotten what it was like before disability stole through the door and sat it's larger-than-life ass on my lap permanently. Before, I was hesitant and uncomfortable when considering social interaction with a person with a disability. I did not ever know if looking away was better than staring or vice versa and I knew nothing of what was possible in between the 2 extremes. I had to observe an individual first to gather clues about how to approach in a way that would preserve that person's dignity. That is what manners are - we meet someone new and lean on manners to assure the other that you mean well. This is not simple when faced with differences in ability. The old standbys might not work, how do I convey my well-meaning? If I talk, can she hear me? If she can't, what are my options? If I just smile, is that patronizing? If she signs to me or speaks and I don't understand, it it OK to look to her caregiver or companion for translation? She doesn't look at me when I talk to her, is she hearing me or understanding me or not - which assumption is better to act on? She is on wheels, what if I slip and throw in a phrase like "just walking around" or "get up and go," will that offend? She is humming and flapping, do I talk as though she is not, or acknowledge it? And what does it mean, the flapping? Is she open to engage or not?

So many questions not fully formed at the moment, but there nonetheless. Staring people are curious, but it's also a process of assessing how to interact and communicate with the other, should the situation arise. It comes down to a desire to maintain dignity. As the parent of a child with differences, I can take a more active role in helping others understand how to fit my daughter into their social frame of reference.

It isn't easy to be new around my daughter. I understand that. Observation is often needed first. OK. Stare a minute. Then I'll take the hand extended, make introductions and answer questions, whatever words are used to form them. When the intention is clarity seeking, being politically correct is not a priority.

Closing the divide between my daughter and the speaking, neurotypical world is.


Kelly said...

Beautiful Terri!

I also wear PollyAnna braids and glasses most days. I have always been that way. People say I am a perfect parent for AnnaKate because of that...I just say you deal with what is dealt to you.

I am in total agreement about how you deal with stares. Embrace the person, make it ok the ask, extend your hand to close the gap between typical and not. We will never be able to make people comfortable around our children if don't offer an olive branch to the starers.

Kelly W.

Jessica mommy to Alex/ RTS said...

This was perfectly put!
Closing the gap starts with us the parents!

Jacqui said...

Your attitude, thoughts and actions are always such an inspiration to me!

KT said...

Terri. I always love your blog entries but I love love love this one. Just trying to decide who all I should fwd the link to. It'll be beneficial for so many!


Cindy said...

Well said. I'm thankful that I'm not offended or embarrassed by stares at Natalie...hopefully parents who are either, will take your words to heart.