To make an envious mountain on my back

The situation was awkward, I have to admit. I had my arms full of groceries as I attempted to make my way through a glass door in the little roadside mall where I’d parked my car. It seemed too heavy a door for the size of the corridor, and for some reason, it opened inward. Anyway, as I struggled to pull it open, trying not to squash some of the more delicate produce in my bags, I saw someone on the other side who looked puzzled at my dilemma.

“Here, let me help you,” I heard her say -or rather saw her lips say- through the thick glass. I suppose I would have been grateful for the help under any circumstances, but the offer came from a frail looking middle-aged woman in an electric wheelchair scooter -you know, the type you see travelling on sidewalks throughout the city, often with a little flag fluttering above them in the wind of their passage. Her legs were strapped carefully in place, in case they, too, might end up blowing off if she hit a bump. And, in case they did I suppose, she had strapped a fold-up walker onto a sturdy-looking rack behind her seat.

Without a blink, she skillfully maneuvered her little craft to the door, and pushed it open with a wheel then, after entering, held it open for me with her hand.

“But how will you get out again?” I asked, amazed at how easily she’d entered.

A smile suddenly appeared on her face as she pointed at the wall beside me. “You just have to touch that button,” she said, pointing to a waist-high metal plate that was painted a bright orange colour. “You learn to look around when you’re in one of these,” she added, patting her wheelchair as if it were a pet.

Perhaps it was the look of surprise on my face, or maybe I hesitated just a fraction too long before I moved towards the open door, but I could see a sudden twinkle in her eyes as she watched me. “What a turnabout, eh?” she said, with barely disguised mirth. “The disabled helping the abled… Who’da thought?”

I must have blushed at the fact she’d read my mind -or at least my body language. “I… I didn’t mean…” I mumbled rather clumsily. But even as I said it, I wondered if my reaction had been that obvious -that, well, rude.

The lady chuckled at my discomfort. “Sorry,” she interrupted, “I didn’t mean to make you feel uncomfortable or anything.” Her face relaxed into a broad grin. “You just looked so surprised…” Then, with a quick and practiced turn of her vehicle she backed it towards me. “Here, put some of those bags on top of my walker on the rack -they look heavy. I’ll help you to your car if you’d like.” And she turned in her seat and winked at me.

Funny, but ever since that time, I’ve begun to look at disability in a different way. It’s almost as if the members of one kingdom were looking over the border and seeing people doing the same things as them, only differently -the us and them version of society they’d been taught dissolving as they watched.

Maybe that episode was what attracted me to an article about disability in the Conversation a while back: https://theconversation.com/should-i-say-disabled-person-or-person-with-a-disability-113618  The author, Mary Ann McColl, a professor at Queen’s University in Kingston, Ontario, and member of the Canadian Disability Policy Alliance, observed that ‘Disability is a sensitive topic. Fear of saying the wrong thing prevents people from saying anything at all, and makes us avoid having important conversations about disability.’

Her point, I gather, is that we should listen to how the person in question talks about their disability, both to understand how they envision it, and to help us address the issue in terms they find appropriate so we can avoid the cutesy language that is supposed to show we ‘understand’. As examples, McColl cites, ‘Language like “differently-abled” or “diverse-ability” suggests there is something wrong with talking honestly and candidly about disability. It might even suggest to some people that there is something shameful about disability; or that we can’t talk about it directly unless we make it cute or pretty or funny.’ Cute they’re not -they’re demeaning. And as  McColl writes, ‘Having a disability doesn’t make someone a hero, a saint, a victim, a burden or a soldier. This type of hyperbole gets in the way of having authentic relationships with people with disabilities. These words suggest one-dimensional characters.’

The lady in the mobility scooter certainly wasn’t one-dimensional, in fact, if anything, she seemed more engaged with the world than I usually am -more interested in helping than in being helped, I think. During that brief encounter with Doris, I realized that once the surprise of her -what, disability?- had worn off, I forgot that it even existed. She was just a woman helping a total stranger in a time of need. She even introduced me to a similarly scooter-bound friend who was waiting for her out in the parking lot. The friend had a lot more levers and buttons on her scooter than Doris, however, and one of her arms was folded, unmoving, on her lap.

“Wednesdays are our shopping days,” Doris explained. “So we usually meet for lunch and a few laughs.”

Stacy, her friend, giggled like a little girl and her eyes flew over to my face to welcome me. “That’s mostly on Wednesdays,” she added with a mischievous smile. “Normally we just go to the park, or to a show… You know, retired-person stuff…”

I couldn’t help but remember the two of them as I read some of McColl’s suggestions: ‘Is the disability a pertinent issue in the conversation you are having or the introduction you are making? We don’t specify a person’s gender, ethnicity, occupation or many other personal details when introducing them. Disability is a condition of life, like those others. It will be salient in some conversations and not in others.’

How right she is. In fact, I have joined both Stacy and Doris for lunch a few times since we first met, and not once did either of them introduce me to their friends as non-disabled. I’d like to think I fit right in…

What We Value

I think it’s about time I revisited the concept of ‘disability’, both in its description and in society at large. It seems to me that the word itself is too value-laden to accept at face value. We are all disabled in one way or another and yet we may not see ourselves like that. And why should we? Disability, like beauty, is in the eye of the beholder –or in this case, the beheld. I first wrote about this several years ago: https://musingsonwomenshealth.com/2012/08/31/antenatal-genetic-testing/

The concept is embedded in context, and like two colours mixed together, can result in something totally different. Totally unexpected –even if innocently mixed. I was reminded of this by another  BBC article on Down Syndrome and antenatal screening: http://www.bbc.com/news/magazine-37500189  Once again there was an acknowledgment that ‘”The whole essence of a good screening programme is the counselling you have before you even have the blood test done or the scan done,” says Alan Cameron, foetal medicine consultant at Queen Elizabeth Hospital in Glasgow.’ And, of course, ‘[…] all experts agree that the way a diagnosis of Down’s syndrome is presented can influence whether parents choose to continue with the pregnancy.’ Even unconscious biases affect the way counsellors present the evidence, and none of us is free of these, I fear. We are all tinted by the colours that surround us, after all.

And I suspect there’s no better place to experience colours than riding in a bus.

I happened to be sitting behind two young women, both of whom were carrying their babies in those little vertical hammocks on their chests that tend to wax and wane in popularity. They evidently were strangers, but as newly minted parents, they seemed anxious to brag and peek at each other’s baby.

“She’s gorgeous,” said the one sitting beside the window, glancing at the closed-eyed head breathing quietly in its tight little container on her seat-mate’s chest. I’m not sure how she ascertained the sex so easily, but maybe new mothers are more adept at that than the rest of us.

“Thank you,” said the other, risking a peek at the sleeping baby beside her. “So is yours,” she cooed, cuing a smile and a flutter of her eyes.

“His name is Joshua,” the window lady responded, as if it was essential to establish that from the start. “Names are important,” she added, more seriously. “It means ‘God is generous’, or something…” To be honest, she didn’t sound too certain.

Aisle-woman was silent for a moment. I couldn’t see her face, obviously, and it might have been rude to look, but I thought it seemed an awkward response. “That’s nice,” she said in a carefully neutralized tone, but that kind of thing is hard to determine when you’re sitting behind someone in a noisy bus. “My little sweetie is called Elizabeth…” I could hear the hesitation in her voice. “I don’t actually know what it means,” she admitted.

“It means God is satisfaction, I think,” window-woman said without a pause. “We were going to name him that –if he’d been a girl, I mean.”

“Oh.” Aisle-woman seemed stumped about how to reply, but her neck-language suggested she was none too comfortable with the God references in both names.

They were silent for a few streets, and then, window-woman, unable to contain herself, peeked at the other baby. “They all look so peaceful when they’re asleep, don’t they?”

The woman nodded and felt forced to reciprocate with a fleeting inspection of Joshua as he snored. I assume it was snoring, at any rate, because it was rhythmic and his mother didn’t seem to be doing it. Elizabeth’s mother reached over and loosened Joshua’s hammock with a finger, thinking that might have been the cause. It was an innocent gesture, meant to be helpful –a mother’s instinct in action- but Joshua’s mother immediately grabbed the offending finger.

“He’s okay,” she said, embarrassed at her protective reflex. “Joshua’s just a noisy sleeper, that’s all…”

Elizabeth’s mother stole another glance at Joshua and I could see the edge of her smile, even from behind. “I’m so sorry, I didn’t mean to interfere,” she said, and adjusted Elizabeth’s little hoodie, just in case. “I thought he looked a little puffy… I wondered if maybe it was the hammock.”

Joshua’s mother forced a smile and then turned to look out of the window. “He isn’t puffy; he looks just like yours,” she said in a soft little voice that I found hard to hear.

“I’m sorry,” Elizabeth’s mother said, touching the other’s shoulder gently. “I… I thought I was helping…”

When Joshua’s mother turned her head to respond, I could see a tear rolling down her cheek. She stroked Josh’s little cheek and the snoring stopped for a second or two. “They told us he’d be…different,” she said slowly, “But he’s really a very good baby, you know…” She stroked Joshua again when he seemed to be rousing, and he immediately relaxed and made some sucking sounds with his lips. “I know he meant well, and everything, but the doctor always looked so sad when he saw me during the pregnancy. You know, like he was trying to console me or something…”

I could see a little tear beginning to form in the eyes of Elizabeth’s mom now. “I’m so sorry,” she said as softly as she could over the rattle of the bus. “I didn’t mean…”

But the window-lady had already pulled the cord for the next stop and was starting to rise from her seat. “God really has been generous to us both,” I heard her say as she reached out and gently stroked her neighbor’s baby as she passed. “It’s just that I’m always going to be reminded of that, I guess…”

She hurried through the opened door and I could see her standing out there as the vehicle pulled away, caressing little Joshua but otherwise not moving… As if maybe the answer was another bus…