The other day I was talking to Aaron and in the midst of our conversation I mentioned, “you have Down syndrome.” He looked at me, puzzled, and replied, “No, I am Down syndrome.”
I thought he had mixed up his verbs and corrected him, “No, you have Down syndrome.”
He repeated firmly, more annoyed with me this time, “No Mom, I am Down syndrome.” He wasn’t mixing anything up. I was the one mixed up.
Who am I to say who he is or is not? He has the extra chromosome, not me. I paused to wonder how often parents use language that makes us feel more comfortable and distances ourselves from disability. I know that I’ve been doing that for 16 years. I even used to lecture to health professionals about person-first language. Aaron was blowing person-first out of the water.
Speaking of which, I’m now asking Aaron’s consent to write about him. (Contrary to popular belief, people with intellectual disabilities can understand consent). He said, ‘sure’ when I asked him about sharing this story. Plus, he chose the photo that he wanted to accompany this post.
I’m finally waking up to the fact that it is Aaron’s Down syndrome, not mine. And so goes the hard work of parenting: allowing our children – all our children – to differentiate from us. He is not a mini-version of me, disability or not. It is high time that l take Aaron’s lead and govern myself accordingly.