Category: disability

Sunday morning, Claire and I were walking hand in hand up the steps to church. As I went through the door, a woman coming in behind us asked, “Is your daughter left handed?” “That’s a random question,” I thought, but I answered, “No?” “Oh, she leads with her left foot,” the woman said. “OH!” I said, “Yeah, she has spina bifida and her left foot is her strongest foot, so she tends to step first and step up with it.” And then she said it.

“Oh, you poor girl!”

To her credit, the look on her face as the words left her mouth was like she’d like to suck them back in unsaid if possible. I had kept moving toward the table where we make nametags, and she ended up writing her tag next to us. “I didn’t mean to say that like that,” she said. “You’re a beautiful girl.” I smiled at the woman. I don’t think she meant to say something hurtful, and she knew it came out wrong.

Claire and I went in, found seats, and sat down. I started to think about what I was going to say to her after church about what that woman had said.

And then guess what the lectionary text was on Sunday? The one where Jesus heals a paralyzed man after his friends lower him through a hole in the roof of the house where Jesus is speaking.

Little known fact: we parents of disabled kids who go to church are a little bit wary of Bible stories where disabled people are miraculously healed. We spend our time trying to convince ourselves, our kids, and the world that having a disability is just another way of being a person in the world, that people with disabilities are whole and complete, just the way they are, and then we go to church and hear retrograde terms like “crippled” thrown around and stories like that of the paralyzed man used to suggest that maybe people with disabilities are more in need of healing than the rest of us sinners, somehow.

To make matters more awkward, the children’s message was actually a play put on about the Bible story by some older kids. My little blonde piece of sassy perfection was sitting on the front row on the floor watching it. And while I’m sure they did it because slapstick humor is always funny, the play presented the “paralytic” as completely unconscious, constantly being dropped or otherwise accidentally injured by his friends attempting to carry him toward Jesus. It completely removed any agency or really humanity from the man, and made the only actors in the story the friends and Jesus.

Claire loved the singing and the big kids and declared it the “BEST. SHOW. EVER.”

After she went off to children’s church, I paid extra attention to the Bible reading of the story, Mark 2:1-12. And you know what I saw? Everyone but Jesus is focused on the man’s physical body, his disability. Four friends carry the man up to a rooftop, make a hole in it, and lower him down. But when Jesus sees the man, his first words are, “Son, your sins are forgiven.” And Jesus stops there. Jesus doesn’t immediately jump to healing that man’s body. He sees him as no different than anyone else: someone in need of grace and salvation, just like we all are, able-bodied or not. In fact, he doesn’t infantilize the man or take away his agency, but he reminds us that the man is a human actor with free will, responsible for his own sins, as in need of forgiveness as anyone else.

It’s only after some of the crowd starts grumbling and questioning, “who is this guy to forgive sins? This is blasphemy!” that Jesus decides he needs a way to show people that he has the power to give us all the wholeness we need. It’s like he goes, ok, fine, since you guys don’t believe I can heal the important, soul-level stuff, let me give you something you can see. And then he tells the man to take up his mat and walk.

Finally, an insight into this story that doesn’t leave me feeling frustrated with a Bible that reinforces a worldview that sees Claire as somehow less than whole in a way that able-bodied people aren’t. Instead, I see a Jesus who sees us all as equally in need of healing and wholeness. A Jesus who gently rebukes the people who might only look at the physical disability and reminds everyone that the place we’re all broken isn’t a place anyone else can see.

That night at the dinner table, I said to Claire, “I want to talk to you about what that woman said in church, how when I said you have spina bifida, she said, ‘poor girl.’ Do you think you’re a poor girl, or that she should feel sorry for you because you have spina bifida?” And Claire said, “I’m not poor! I’m just different!” We talked about how our bodies are not the reason we love and are loved, but that it’s our hearts and minds that make us who we are to people. We talked about how so many of us are different and need help sometimes. And we reminded her that we love her because of who she is, a funny, nurturing, hilarious little being who takes such great care of everyone around her. Thanks be to God.