Making Our Presence Known

download   What do you get when you cross an extroverted middle-aged woman with a profound developmental disability with a ton of unsuspecting tourists at the small town diner?  The answer: lots of confused looks, blank stares, and uncomfortable shuffles.

We live in a society that promotes “wellness.”  This unfortunately has redefined our perceptions of beauty, perfection, and strength.  Instead of being humbled, we are prideful.  Instead of being open to wonder, we believe that wonder only exists in those exactly like ourselves.  That’s why it’s such a refreshing moment for me whenever I visit a local store or restaurant with Maggie, one of the core members I live with in Cape Breton.

Maggie is always very energetic and active.  Upon first meeting you, she will often offer a firm handshake and perhaps a kiss on your cheek.  Maggie does not have this sense of “personal space” nor does she understand awkwardness.  Instead she relishes in the attention that she believes people are giving her.  She likes to always be at the centre – the one recognized and noticed.  Which makes complete sense because she has spent most of her life on the margins – being unnoticed, ignored, and walked over.  For Maggie, a quick hello is not enough, she expects a bear hug.  A slight wave is barely anything, she demands a full-on embrace.

When I first started taking Maggie on outings I admit that I felt strangely out of place and even embarrassed.  I wasn’t sure how others would take her invitation to be included in her life, so I used to stand there awkwardly.  Half the time I was trying to either prevent her from saying hi or to tear her apart from the unsuspecting shopper who she had already snuck up to.  However, recently my attitudes have shifted.

What is so awkward about a person with Down Syndrome, autism, or cerebral palsy saying hi to someone at the corner store?  I know it is a sad reality, but I sometimes wonder if these same abelistic mentalities still sneak up on those of us who work in the field, are caregivers, or parents of someone with a disability.  We, of all people, should be ambassadors, should “know better” but maybe there is still a part of us that has bought into society’s ideals.

A few months ago I attended a brilliant disability theology conference up in Belfast, Ireland and I remember one lady sharing with tears in her eyes about how a young man at a grocery store needed her help, but because she was not his caregiver and did not know him, she basically ignored him and went on with her own shopping.  Months later this thought still terrifies her and makes her feel incredibly guilty.  She also has a child with a disability and has worked in the field professionally, so she couldn’t wrap her mind around her response.  She didn’t know what caused her to panic in that moment and to feel awkward and shy.

She’s not the only one.  I know I’ve done it many times myself.  When I’m in L’Arche I’m full on involved in our core member’s lives.  I don’t mind helping in anyway, and personal care is not a strange or foreign concept to me.  But the moment I’m on my “day off” and at the grocery store it’s like I can become a completely different person.  I don’t know why this is.  I could blame society’s expectations, but I really think it comes down to how we personally think and feel about disability issues.

It can be difficult to know how to relate to someone who is quite different than we are, but it is almost always worth the investment.  We can start small.  When you see someone struggling at a grocery store, don’t walk into the next aisle, treat them like a child, or ignore them.  Ask if they are alright and if you can assist them in any way, even if it’s just opening a door or pushing that pesky shopping cart through those annoying turnstiles.  Approach the individual as an equal and as an adult, don’t ask questions in patronizing or condescending ways.  Don’t change your tone or your vocabulary to sound like you’re addressing a two year old, ask the person if they need help the same way you might like someone to ask you.

If you see a child with a disability having a full out tantrum in the store, don’t walk away or offer the parents a sympathetic or condescending look.  See if you can be a needed presence by distracting the child with humour.  Don’t make the parent feel like there’s an “us versus them” mentality.  If you’re a parent, chances are you’ve experienced the exact same thing plenty of times regardless of whether or not your child has a disability.  Offer compassion and empathy, not judgment.

And if you’re accompanying someone like Maggie to the store, just let her be herself.  Don’t hinder her from saying hi and reaching out.  Don’t take ownership for how you think other people will react.  Open your heart and mind to the possibility that maybe this type of interaction is exactly what the other person needs.  Maybe they are having a really difficult day, and Maggie just intuitively knows that and wants to cheer them up.  Or maybe, Maggie, like all of us, just wants her presence to be known.  Wants us to stop living in our abeslistic bubbles.  Wants to be heard, cherished, and loved.  Wants to be free to express herself.

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