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Give her time, not tragedy

May 13, 2019

 

A few days ago, a friend of mine called me. She’d had a baby girl in April (also my birth month) who did not move her legs. 30 hours after giving birth, baby girl was whisked away to a children’s ward at another hospital for testing and poking etc etc.

 

“I thought about you a lot in those days.” My friend said.

 

They never figured out why baby girl wasn’t moving her legs, and the rest of her checked out fine, and she’s moving around bit by bit.

 

“We’re letting her get used to gravity, giving her time.” My friend said. And, “I thought about you. Your life is so full and happy. My baby girl will live her life on her own terms no matter what the outcome.”

 

I don’t live my life thinking, I’m going to be inspiring to others. That would be a weird and stressful way to live. I do what I want, because I want to. I think that is what makes it inspiring. Not what I *can* do despite low expectations, but that it starts with wanting to, and ends with going for it. Facing all the uncertainty in between.

 

The idea that disability is a permanent state of tragedy leads to a strategy of limiting desire in order to avoid struggle and disappointment. A strategy society, our families, our communities tend to expect from us and project onto us. A projection that starts in those first crucial hours with the concern and despair of caregivers and medical professionals.

 

“I know how scary those days can be,” I said to my friend.

 

“It was really hard to be separated from her so early, but what was happening with her legs wasn’t as scary as I thought it would be.”

 

I think one (of many) reasons disability holds a sense of tragedy in the collective imagination is a fear of the especially brilliant pain that comes from not getting what we want. If we let ourselves open to desire, we are vulnerable. And if disappointment is inevitable then it kinda makes sense to limit what you want and what you try. But disappointment, limits in general, is a human experience - not a disabled one. That’s the gravity of life we all have to find our way to wiggle under - it will (at times) disappoint us, desire is always risky, struggle (effort) isn’t bad for you. 


I love how my friend is giving her baby girl time, not tragedy. Maybe she’ll get used to gravity, maybe she’ll defy it. 


That inspires me. 


 

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