Lucas Warren, the current Gerber baby, is delighting mainstream and social media. Of course he’s cute. And deserves all the oohs and ahs he is getting. The big deal is that he has down syndrome. Which to some people should no longer be a big deal. To me it’s a really big deal. Perhaps it’s both.

The Gerber baby decision didn’t spring out of thin air. It represents a moment of cultural transformation for people who experience down syndrome. And the tears, suffering and hard work it took to get here. It proves that every step, even baby ones, makes a difference.

It wasn’t that long ago these same people were represented in poses so lifeless and desperate that one wonders whether they were designed to frighten. They triggered pity at best and at worst reinforced a cultural stereotype that their differences were so extreme they were best kept separate from the rest of us. We now know that many such pictures were doctored. And that a conspiracy of social and medical sciences perpetuated these faulty and deadly assumptions.

We also know that as a result many, many people with down syndrome lived lives of desperation, taken from their families and warehoused in institutions. Where, it must be remembered they were neglected, abused and killed. This is not ancient history. And in some places remains reality. And yes the assumptions that justify this cruelty still impact in more subtler ways.

The cure for such behaviour is ultimately a shift in cultural beliefs, values, habits and behaviour with accompanying shifts in policy, research and funding. In this case the shift is in favour of looking past differences and honouring the desires, delights and deeds of everyone.

Lucas the Gerber baby signifies that something is changing for the better in popular culture. It is a reminder that such transformations are the accumulation of an incalculable number of steps taken by an inconceivable number of people past, present and future.

It is important to remember how far we have come and who got us here. I wish I could find a way to properly honour:

The people with down syndrome who died of broken hearts, broken bodies and wasted lives.

The rights advocates who wore themselves out sacrificing their health, their marriages and sadly, too often their families.

The people who wouldn’t take no for an answer and who found ways around the impenetrable walls of indifference.

The storytellers, policy makers, service providers, funders and businesses who enabled people with down syndrome to show and tell their story.

And the folks experiencing down syndrome who made and make the world a better place as politicians, artists, fashion designers, teachers, clerks, actors and responsible citizens.

The teardrops of their fears, dreams, toil and ingenuity are merging into one. A mighty river is starting to flow.

EH!

Change is inevitable. Growth is optional. ~ Marsha Forest and Jack Pearpoint

The world is like a big round ball. What bounces the world? ~ Liz Etmanski

Musical accompaniment this post The Upside of Down performed by Fred Penner, Rick Scott, Pied Pumkin and assorted musical and dancing friends.

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One Comment

  1. Marni Eddy

    Hi Mr. Etmanski. I was Liz’s first EA at Elgin Park Secondary! I hope all is well with the family. Please say Hi to Liz for me!

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