Monday, July 5, 2010

Is big better?

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

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.


Having a child with Down syndrome, Terry and I often hear people (in the know about Ds) exclaim over Gabriel's height. It's an interesting thing because sometimes it feels as if that mere observation separates him from the whole of the Ds community, and perpetuates the blanket idea that children with Ds have short stature.

And yet, his height in the "typical world", where he is right on par with his typical peers, brings on expectations like "act your age". It's a difficult thing because his height is a false facade and the presumptions about Gabriel can make things tough for him, and for us.

I hope that as Ben matures, his longing for "tallness" will grow through his heart and mind and he'll see that being a man in itself is far more beautiful than that of society's idea of the "big man". :)

I plan on reading Tutu's book "No Future Without Forgiveness" because that quote is SO inspiring. I think that has been the most sage wisdom I've read in a long, long time.

This may be of interest to some of you. The Access 2 Entertainment card entitles the support worker of a person with a disability to free admission to many movie theatres across Canada, as well as many attractions in Ontario and some other provinces. More details are below. I heard about it through a friend who has the card.

I've been lurking here for a while, but I don't usually post. My son has hypopituitarism along with a visual impairment (he's legally blind) and he will most likely need human growth hormone to grow. So what you have written about today really touched me. Skyler is too young to ask why he is so small (he is underweight and tiny, but he was born 2 months early as well) and I often wonder what I will tell him when he starts to ask those questions.

Welcome Azaera -- I'm so glad you posted and it's great to hear about Skyler. Have you been in touch with the Magic Foundation in the US -- they are an association for families of kids with growth issues. Many of their members have kids who receive growth hormone injections. We also had a trial of these with Ben many years ago -- but they didn't work for him (but he wasn't technically growth-hormone deficient).

There are many great sayings about the beauty of being small: Good things come in small packages, small is beautiful. When Skyler is interested in his size, I'm sure you'll think of an age-appropriate, simple way to explain why from a medical perspective. I always made a point of emphasizing the good things about being small and how some people are big and some small, and everyone is different and that's okay.

I hope we get to hear more about Skyler!

Thanks for your posts Lianna and anonymous!

It's interesting how people make assumptions based on children's size -- but I guess it's all part of the snap judgments that are made everyday based on different aspects of physical appearance.

I would love to hear your impressions of Tutu's book Lianna (which I haven't read).

We just got the Access 2 Entertainment card -- thanks for making our readers aware of it!

Oh, wow. This post was just so moving. Thank you for your honesty. You are such a good mom.

Thanks for a wonderful post, Louise.

Ugh. Size can be such a trigger for me, too. People are constantly asking me if my boys are twins, even though they are three years apart and look nothing alike! (You can check out for my recent post on this topic.)

And just last night with dinner guests we had a "you're such a big boy" moment that made me cringe just a little. (One guest said that to my short, 7.5 y.o. 40-pounder, son and then, in response to the tall, 4.5. y.o. 45-pounder's plea for attention said, "And you're a REALLY big boy!")

I think it can be especially tough when the younger one(s) has (have) skills that exceed the younger one's. My older one, the one with an unidentified genetic syndrome, is still kind of oblivious to it, but my younger one is catching on fast. I know I'll have to be vigilant to help my older son keep up his confidence in both his size and cognitive development.