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Creating Space in the Church for People with Disabilities
Penny and me, when she was 8 months old

Penny and me, when she was 8 months old

I had a wonderful time in North Carolina last week, and I hope I'll take the time to write a series of posts based on the questions and conversations I had with people from the Duke Center for Reconciliation, Reality Ministries, the Trinity School, and at the Church of the Apostles. There were questions about how to raise our children with grace instead of perfectionism, how to teach our kids to see people with disabilities as equals and potential friends, how to apply God's understanding of our humanity (broken and beloved) in our every day lives, how to send birth announcements about a child with a disability... Many thanks to all the people who asked great questions and offered helpful thoughts and encouragement!

One woman asked me about including people with disabilities in her church. She attends a church where people with disabilities are welcome and present at every service. But some of those people worship in an unconventional way, complete with noises and gestures that might alarm or annoy other newcomers. She asked if I saw any way to welcome both?

My answer was threefold. First, a genuine welcome will always be one that includes everyone. Second, that explanations in the literature about the church and/or from the pulpit as a service progresses might help to alleviate some of the concerns or discomfort felt by "typically-developing" newcomers who are surprised by their neighbors in the pews. And third, that trusting God's inclusion of all types of people is counter cultural (even within the church), which means it will always turn some people off. So be it.

What if all churches were known as places where everyone was welcome? There's a new book out, Amazing Gifts: Stories of Faith, Disability, and Inclusion by Mark Pinsky. The title speaks for itself, and as it happens, I submitted one of the stories, a story about some of the practical problems we faced in finding a place for Penny in Sunday school at our church, and the great support and encouragement we've felt from that church community throughout her life. My chapter is written as a letter to Penny's Sunday School teacher from a few years back, and it begins:

You may remember when Penny was born, as many people in the church were praying for us. It was December 30th 2005. The doctors told us Penny had Down syndrome a few hours after her birth. I spoke with our pastor the next day. He cried with me on the phone. There was so much fear–Was there anything wrong with her heart? Would her little body (she was only five pounds) be able to stay warm? Would she be able to nurse? But just two days later she was home, healthy and putting on weight. Those immediate fears had been addressed.

It took longer to overcome our grief. Grief for the child we thought we deserved. Grief for an image of ourselves and our family that had been shattered. It was an ugly grief. It brought up all my insecurities, the value I wrongly placed upon ability and intelligence, the value I wrongly placed upon conventional beauty.

I'm thankful to say that the grief seems to be over. In fact, I sometimes look back and can't understand that sadness, sadness so thick and strong I thought it would pull me out to sea and drown me. Now, I don't see Down syndrome anymore when I look at her. I see Penny. Cute, mischievous, funny, with those big green eyes and pudgy cheeks. I think of her saying, ‘Watch this move, Mom,' and striking a pose. Or looking sternly at her younger brother when he is trying to take a toy from her, and then, in her best imitation of a teacher at school: ‘Please stop, William.' I no longer have fears about her future that keep me up at night. I no longer have reason to cry. In fact, I go to sleep most days with reason to celebrate.

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