Stop looking at me!
It’s the summer holidays. It has rained a whole of two days and siblings around the country are complaining about the most mundane things. Like,
“MUM! He’s looking at funny. Tell him to stop.”
My eldest brother used to complain I breathed too loudly whilst he was watching the TV. He certainly used to look at me in a way that induced a loud plea to my parents to make him stop.
You’d think I’ve moved on but at the ripe old age of 41 I still find myself wishing strangers wouldn’t let their eyes linger a moment too long. A decade ago it was much harder. When the emotions of pushing my son around in wheelchair were raw and constantly bubbling under the surface. Harder still were the times when the look was followed up with words.
Words I don’t know how to respond to.
Words that cut through my heart, no matter how well intentioned.
Words that leave me feeling vulnerable and exposed.
There are many disability clangers, some I wrote about here. A couple of years ago, I was in our local supermarket when a stranger stopped her work, looked sympathetically between me and my eldest son and sighed ‘Aaaaaah!’, as though slightly disappointed at what she could see.
Only this week, I was messaged by a parent asking how I cope with stranger stares and uninvited comments. Some parents become indignant and frustrated, wanting to correct the stranger with explanations like, “My child is happy and has achieved so much” or “He doesn’t need your sympathy”.
More often these days, I simply smile in response to stares or impromptu conversations. In my book, The Skies I’m Under, I tell how I gave one poor man in the supermarket an earful. With time, I have come to realise the stranger staring is simply having the same emotions I once had.
I remember our defining moment.
The time my world changed as a result of the quiet, well-crafted words of a consultant breaking bad news. That juncture is etched into my memory like a finely carved masterpiece. Each detail has been marked, smoothed and toned over time. Without hesitation, I can recall the consulting room where the‘news’ was broken. My senses flood with the memory; the scent of bleach, glaring lights, the touch of my husband’s hand in mine and the silence interrupted by the doctor’s words. Recalling the experience is like hearing an old familiar tune that transports me back in time to a moment and place never to be forgotten.
When a Stranger looks at us with eyes of fear, sadness, confusion or regret, I try to remember this might be their moment of diagnosis.
This is a strangers first flash of disability.
I was shocked and saddened by the news of disability and this stranger, stacking shelves, is simply having the same emotions. There is a time I could have been that stranger. Even today, I find myself looking at a family like ours out of a sense of camaraderie but I don’t always get chance to explain my lingering looks leaving me just another staring stranger.
Even though I have largely moved on from the doctor’s office, this stranger hasn’t been on my journey. It is as though we all stand on the same beach but some of us have crossed a line in the sand into a world of disability. As a result, our perspective has changed. We look across and see the mountains in the distance as clouds gather and form at their peak’s, while others can only see the sand and dunes close by. The same smell of ocean fills our nostrils, with the sound of waves echoing in our ears yet we look at the beach, at life, in a different way. I cannot expect others to know what I know.
I cannot expect a stranger to understand.
So, with each grimace of confusion, tilted head of sympathy, and sigh of tragedy, at my child’s condition, I try to smile and remember. I was once there too. In truth, I stayed there longer than I would have liked and some days that moment remains too present and close for comfort.
Sometimes, I have the articulation and words to speak. To try to re-assure this stranger that we are so much more than what she can see. That there is more to the world of disability than the doctor’s office. But with each stare, I try to give a little grace and kind recognition that the reality of the ‘news’ can be an uncomfortable and scary place.
The truth is, only a small portion of families get to experience the highs and lows of the journey beyond the doctor’s office. What to say to children? Well that is simple, the truth in accessible terms because children are only asking from a place of inquisitiveness and curiosity.