The other day Ben pointed at me and signed: "When did you grow up?"
"A long time ago," I said. He asked D'Arcy the same thing.
Then he gestured to himself to ask: "When will I grow up?"
"You are growing up, right now!" I said.
Later I thought about one of the signs he used and realized that it was "tall" – bent hand rising up into the air – not "grow" – one hand pushes up through the other, as a flower shooting up through soil. So he was asking: "When did you get tall? When will I get tall?"
It's been a long time since I spoke to Ben about his size and the fact that his syndrome makes him short and small.
When he was young, the way we value height and anything "big" grated on me.
I got tired of hearing people gush "What a big boy!" – even though they were often referring to a child's age, health or ability as opposed to size.
As I thought more about it, "What a big boy" seemed to be a strange code for "your baby is healthy" in Western culture.
After all, before most mothers hold their children for the first time, they’re weighed and measured like meat, and many new parents include these measurements in the birth announcement: Joe arrived weighing in at 8 lbs and 21 inches.
While your baby is still largely a blob, progress is measured by regular visits to the doctor who records miniscule changes in weight, height and head circumference. New mothers compare their child’s numbers with normed growth charts and with their friends, looking for where their infant 'stands' in percentiles.
In a world obsessed with individual achievement, babyhood is a competitive business. Books charting typical growth and development for infants are bestsellers. Before your child can outdo others in smarts, athletics or social aplomb, he or she can shine in size: big is better.
The value our culture places on size and height carries over to adulthood, where, particularly for men, it’s better to be big (but not fat) and tall. “There's plenty of evidence to suggest that height – particularly in men – does trigger a certain set of very positive, unconscious associations,” notes Malcolm Gladwell in Blink, the bestseller about how we make snap judgments.
So I will have to have a talk with Ben about why he doesn't grow like other people and will always be little. "Small is beautiful" I used to say when he was young. I'd come up with ways in which being tiny was an advantage: like being able to sneak into a really tight spot, or being a race jockey. Given Ben's hip problems, the less weight he carries the better. But what teenager thinks like that in a culture like ours?
On Lianne's blog My Life with Gabriel, I read part of a quote from Desmond Tutu on ubuntu, an African expression about what makes us human. It's a refreshing shift from the competitive individualism of North American culture:
My humanity is caught up, is inextricably bound up, with yours...We belong in a bundle of life.
We say, “A person is a person through other persons.” It is not, “I think therefore I am.” It says rather: “I am human because I belong. I participate, I share.” A person with ubuntu is open and available to others, affirming of others, does not feel threatened that others are able and good, for he or she has a proper self assurance that comes from knowing that he or she belongs in a greater whole and is diminished when others are humiliated or diminished, when others are tortured or oppressed, or treated as if they were less than who they are (page 31, No Future Without Forgiveness)
Here are some interesting (unrelated) links I came across:
Disabled Discounts is run by a couple that began researching discounts available to people with disabilities when one of them was diagnosed with multiple sclerosis. Their listings – for an annual fee of $25 – may be of interest to our U.S. readers. You can also follow their blog at http://blog.disableddiscounts.com/
Maternity Rolls is a new book by a Canadian mother who uses a wheelchair: "I realized that I looked like a living contradiction – disabled and pregnant – and that contradiction was pushing others to reconsider and confront their ideas of whom and what I should be."
Wheelchair wheelies is a story about an 18-year-old with spina bifida who does extreme wheelchair stunts, including back flips, at a skate park.