Why Allies Matter to the Down Syndrome Community
The wheel has turned round for a fifth time since my son Rukai joined humanity, and here we are on the cusp of another World Down Syndrome Day — Tuesday, March 21. “Yeah, rah rah, so what?” you might say. “What on earth can you tell me that someone already hasn’t?”
AHA! There’s the rub…
I can’t tell you a thing.
I can’t tell you a thing, because just as I predicted five years ago, Rukai is pretty much exactly like any other kid, and there’s only so much clinical jargon I can hurl about when it comes to the condition which is supposed to make him an anomaly.
But (and you know where this is going) he’s still not. He’s a kid. A 5-year-old boy called Rukai. He is no one to fear, nor to pity, nor to discard.
A kid with possibility. A future. Feelings and emotions and a distinct, raging lack of opportunity lain before him by others because he has a learning disability.
That is what is to be pitied. But I digress…
Of my son, I can’t tell you a thing, other than to ramble on about what he has learned, how he’s developed, how much more deeply he’s embedded himself into my heart — a heart which in size is quite pathetic in comparison to his own. That little, huge heart which seems to me to begin at “delight” and end at “joy.” That heart which loves first, questions and answers all in one breath and demands to light up, to elevate, to soar.
I have not seen Rukai do self-pity, or jealousy, or hatred, or envy, or malice.
He sure does crabby and stubborn and annoyed, but the real dark stuff? No, I have only seen light here.
And this is a problem, how?
The other day I saw a clip of some televised interview where the subtitle still referred to my child as a “Down baby”— those poor uneducated editors or producers or whomever’s job it is to categorize human beings throwing that phrase out as they’d throw my boy out, without any inkling of what they’re missing. The presenters’ discomfort seemed palpable to me, as if they no idea where to look or what to say other than “he’s so cute!”
But I know better. So many of us know better. And as God is my witness, I hope with all my nattering for half a decade, and from all the others who know, with all our angst and anger and fear and upset and triumph and compromise and adjustment, with all those things…
I hope you know better, too.
Unless you want a full run-down on every milestone my son’s hit, or every holiday we’ve taken, every party we’ve attended, every school day we’ve enjoyed, every dance class we’ve loved, every friend we’ve made.
I can’t tell you a thing.
Because what I’d say would be so typical, so ordinary, so normal, that it would bore you to tears. But out there in society, there is such an undertow about this condition, the misinformation churning, threatening, sucking people under the mire of falsehoods, of confusion, of gut-wrenching fear.
Lies, lies and damned lies.
Yet here I sit, pounding away on keys that have so many stories hidden within them. I know the past year has been difficult for the Ds community, in terms of political tides, so-called medical “advances,” those things which, prior to having Rukai, I would have welcomed with open arms. Because I only heard what medicine and society were saying: “Problem.” I only heard what fear was saying: “You can’t handle it.”
And today, five years on, I answer them all: Joy. Fortune. Stronger than you think.
I won’t kid you. Life is hard. But before Rukai, life was harder.
Because before Rukai I didn’t have unconditional love. I didn’t have someone who was like a sponge, eager to learn and sharp as a tack. Although he takes longer to learn, he does learn. But more importantly, I learn.
More still, you learn.
So now that you’ve heard me for that half-decade… Now that I’ve written those words which stick in your craw, which jab you like a sharpened elbow in a shopping mall…
Take them.
Take them in, pack them up, wrap them in a tight bow, and give them away.
Go ahead and teach someone else. Tell them. Help them see. Help them understand.
Down syndrome is not a disaster. It is a difference. People with Down syndrome are people. They are not a malfunction. They are not a flaw. They are not a problem.
Rukai is my son. Rukai is my heart. Rukai is my world. Rukai is a person. He is not “Down syndrome.”
Since the day he was born, I made a promise to him, in my cold hospital room, listening to Adele singing about a fire starting in her heart. Mine was blazing too.
“I’ve got your back,” I whispered. “Welcome to the world, little man.”
If you’re reading this, if you are feeling this, if you care about this — take it and teach. Welcome him to the world once and for all.
I cannot do this alone.
#WDSD17
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Born in the Chicago suburbs, Maxine now lives in London with her husband and their amazing son Rukai, the brightest light in their lives who has taught them more about patience, kindness and dealing with adversity than they ever thought possible. Rukai has Down syndrome but it sure doesn’t have him. She blogs about him on http://downinfrontplease.blogspot.co.uk.
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