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…