Recently, I experienced two extremes of how others see me and my life as a person with disability.
Sadly, it's not actually unusual, but on this day, I felt the extremes more than I have in a while.
I was heading to work, quietly minding my own business and pondering my day ahead. I was feeling thankful the day was still relatively cool and welcoming given the forecast.
A friend drove past as I waited for the traffic lights to change and smiled and waved, as one does in a country town.
A short time later she sent me a text: "You have to be the trendiest wheelchair user I have ever seen. If I wasn't driving, I would have taken a photo and sent to you — have a good day and catch up soon xoxo. "
I laughed, I smiled from ear to ear. I felt loved, I felt seen, I felt flattered.
Later that morning, I had a medical appointment and was seen by a nurse for treatment — she was friendly, polite and patronising.
"Ooh ... you're good at that," she said with surprise as I steered my wheelchair into the waiting space.
Sigh. "Yes I am," I replied as I shrugged off that sense of foreboding that this was going to be time spent fending off assumptions.
As I showed her the area needing attention, she looked down and said "Ooh … you're wearing nail polish … did you put it on yourself?"
I felt myself slip into a heightened state of awareness about how this interaction was about to go.
Now call me sensitive, but on the previous visit, the doctor asked the nurse questions about me as if I wasn't there: "Does she …? Can she …?"
To her surprise, I answered … all by myself!
I have experienced this before and I'm sure it won't be the last, but some days it just stings more than others. The spontaneous feedback from my friend who sees me felt negated by a stranger (and a health professional to boot!).
Questions to help people know me
Recently I met a new work colleague. We had a great introduction and interesting and robust conversations about wide and varied topics from the get-go. Not more than 10 minutes in and they asked: "So what happened to you?"
Once again, I am asked that question by someone who is little more than a stranger. I answer. It's the same phrase and story line I've been repeating for 42 years now. It's tiresome, and yet I am patient and pleasant in the re-telling.
Usually, the question doesn't come from a place of malice or harmful intent, it's mostly from genuine interest. But it is tedious, and I urge people to consider why this is important to them BEFORE they actually know me.
Why is it more important than the who I am? The questions that would help you know me are more about what makes me smile, what authors do I read and what is my favourite thing to do? These are the connectors, the relationship builders.
Why does knowing what happened to me rank more highly?
I can guarantee that once that question is asked, the next part of the conversation is me trying to negate their reaction which is usually shrouded in sympathy, disbelief, and ableism.
The internalised ableism response from others most often goes to a "deficit mindset" about how tragic my life must be.
That's not really seeing the "me" sitting before them — the smiling me, the reading me, the working-mother me, the bike riding, swimming, jet skiing me ... the me that is so many things.
I have competency fatigue.
I'm over the constant effort of feeling the need to "prove" my worth, my intelligence, and my competence. It's tiresome, it frustrates the hell out of me, so I'd like it to stop.
It's not hard to be the person who sees all that someone is — a wife, a mother, a friend, a community volunteer — rather than the narrow expectation of what having a disability affords.
I guarantee that I am not the only person with disability who experiences this.
There's so much more to me than what you see sitting before you, and I challenge you to assume competency in those living with disability.