Disability
Stories, theology, and cultural commentary related to disability.
Do you ever have a day that captures the simple goodness within your life? For me, it doesn't happen often. I have lots of grumpy days--when the kids are whining and I'm tired and there's a voice in the back of my head telling me to pay more attention to the good things but instead I ...
Virginia's Democratic Governor Terry McAuliffe recently signed two bills into law that provide rules for licensing genetic counselors. Genetic counseling has been recognized as a field since the late 1970s, but many states still fail to regulate it. With advances in technology and an increase ...
My daughter Eden is slow. I know that sounds negative. It feels almost like a betrayal to write it. Our world rarely welcomes slowness. But Eden, who is nine years old and has Down syndrome, remains unaware of the need to rush. Ever.
This morning she walked out of the house with mismatched mittens, ...
"Good morning, sweetie peetie," I greet Temma each morning, my own eyes still half-shut when I paddle into her room. Her eyes are most often open as if she has been waiting for me. She startles a bit at the sound of my voice, her arms and feet lifting up and her eyes becoming even more ...
So much pain. I was at what should have been the prime of life. Med school finished, internship and residency done. Two kids and a wonderful wife at home. But there was so much pain.
I was a rheumatologist practicing in Roanoke, Virginia when I began to have discomfort in my feet. I instituted ...
"If people in your community are going to Wal-Mart in their wheelchairs but not coming to your church, a lot of times the church community calls them shut-ins. They're not shut-ins; they're just shut out of the church" (Ned Stoller (cited in Making Churches Accessible to the Disabled, ...
It had been more than a year since we last buried a child. And though we all knew it would eventually happen again, it felt like an especially hard blow. When the time came, Special Hope Network had existed in Lusaka, Zambia, for close to four years and we had been serving children with intellectual ...
A few years back, I read a beautiful and heart-wrenching article in the Boston Globe about a family who had adopted a child from Uganda named Ruth. I reached out to the author, Meadow Rue Merrill, and an online friendship budded in time. Since then, I've had the privilege of reading Meadow's ...
Every week, I read heartwarming stories about Down syndrome: homecoming kings and queens, young men and women going to college, starting businesses, becoming models and actors, running marathons. And every week, I read horror stories about Down syndrome: rape that only becomes more horrific when ...
People sometimes ask me what I've "done right" with Penny. They ask because Penny reads and goes to ballet class and practices piano and orders her own meal when we eat at a restaurant. They ask because she is "high functioning." I suspect many people assume we've coached ...
It's a bright Sunday afternoon at the park. My youngest daughter Evangeline giggles in an adaptive swing while her dad dutifully pushes her back and forth. We adopted Evangeline, who has Down syndrome and autism, from Ukraine. Elaina and Zoya, our two older girls, with adult-like bodies but childlike ...
When Penny was diagnosed with Down syndrome at birth, I was sad and scared. The sadness and the sorrow dissipated with time, replaced by joy and hope. One of the reasons I began to have joy and hope for this baby I loved was because I began to believe that she wasn't defined by the list of delays ...
Peeking out from my living room window, I see one of my sons chucking a snowball at a neighbor who has Down Syndrome.
This could be disconcerting for some moms, I know, but not this one.
It's February in North Carolina and, after a rare snowfall, the friendliest snowball fight you could ever ...
A few weeks ago, Jerry Seinfeld appeared on The Tonight Show. His five-minute comedy set included a joke comparing inept postal workers to the "mentally handicapped." (See Mark Leach's gracious post about this incident for more information and analysis of it.) Seinfeld didn't use ...
Soon after our daughter Penny was born and diagnosed with Down syndrome, I started to ask questions about the spiritual implications of her disability. To give a glimpse of some of the questions I was asking, here's an excerpt from our time in the hospital, as related in my memoir A Good and ...
At 5:00, my oldest daughter Penny finds me in bed. Cough drop wrappers, a used tea bag, and Dayquil packets surround me. "Come on up, sweetie," I say, and she climbs in next to me.
She has brought her spelling book. Her second grade assignment this week involves ten plural words. As she ...
A friend of mine read a prayer at church yesterday which included a reference to "the epileptic boy." She received criticism later on because she hadn't used "person-first" language. She hadn't put the boy first and his diagnosis second. She could have said "the boy ...
In addition to the video chat about this blog with Katelyn Beaty yesterday (and for those of you who might be like me and prefer reading words to watching conversations), I thought I'd offer a few thoughts on what to expect from this blog going forward.
The title of this blog, "Thin Places," ...
In early 2010, Amy Julia Becker was a wife and mother of two, an MDiv student at Princeton Theological Seminary, and the author of an unpublished book about raising a child with Down syndrome. The book had been rejected by 48 publishers. "I put the project away, focused on finishing my last ...
It sounds pretty basic. A lovely young couple wants children, and they want those children to prosper and grow. They want to do as much as they reasonably can to ensure that those children have good, full lives. Happy lives. Lives that are as free from suffering and pain as possible. The problem ...