“I am who I am”

Slide1Do people with differences want to be cured?

So asked Andrew Solomon in his recent talk at the Richard Gidney Seminar on Faith and Medicine in Toronto.  There’s a very well-written summary of his talk by Stuart Mann on the Diocese of Toronto website.

There are many things I love about Andrew Solomon’s words.  I recommend his book Far from the Tree to all parents I know.  As I’ve discovered with my eldest son, it isn’t just children with disabilities who fall far from their parents’ tree.  It can be ‘typical’ children too.  My own philosophy is that we should encourage all children to fall far from our trees.  For typical kids, we might have to create opportunities for this to happen, so they don’t end up as mini-me versions of ourselves.  For children who have differences, this fall from the tree has already happened, sometimes even at conception.

I’m fascinated by Andrew Solomon’s thoughts around curing people with differences.  This is tied closely to his assertion that love and acceptance are two different things.  How many children grow up believing they weren’t loved, because their parents (who probably did actually love them) did not express that love in a demonstrable way?  And how many of us feel that our parents truly accepted us, with warts and all?

For children with disabilities, this gets even more complicated.  We often race around trying to ‘fix’ our children so they are ‘more normal.’  This might be done from a place of love, to help them avoid the pain of being different in society. (Or our own pain of having a child with differences). But is this acceptance?  I think not.  Every single cell in my son’s body has an extra chromosome.  If I took that 21st chromosome away, he would be an entirely different person.  Here’s the quote about curing from Andrew Solomon from his talk:

“There’s the question of whether people want to be cured or whether they feel their condition defines them and they don’t want to be cured,” he said. “A person with autism told me, ‘When parents say, ‘I wish my child did not have autism,’ what they’re really saying is that they wish the autistic child they had did not exist, that I had a different, non-autistic child instead. This is what we hear when you mourn over our existence. This is what we know when you pray for a cure, that you’re fondest wish is that someday we will cease to be and a stranger you can love will move in behind our faces.’ That’s an extreme point of view, but it was shared by many of the people I talked to. They said I am who I am. I have come to have an understanding of myself as who I am, and I am just as human as anyone else.”

This statement is so very profound to me.  If Aaron didn’t have Down syndrome, he would indeed cease to exist.  And since Down syndrome encompasses a facial difference, Aaron would not even look the same.  He would be another person entirely.

As I progress along my journey as Aaron’s mom, I’ve realized accepting Aaron includes his Down syndrome, means loving, accepting and yes, embracing and celebrating every bit of him, even the bits that make him so different from me.  That includes the parts that are typical 11 year old boy (his love of Minecraft and sports) and the parts that perhaps belong to his 21st chromosome, too (his behaviours, often called non-compliant by others, his challenging speech).  Accepting him means helping him embrace, celebrate and own his own identity, too.

I once read an (unattributed) quote from a dad, which spoke to me too.

He said:  when my child was first born, I wanted to my son to change to be accepted in the world.  Then I wanted the world to change to accept my son.  Now I know it that I am the person who has to change to accept my son.

And amen to that.

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