Disability
Stories, theology, and cultural commentary related to disability.
When Penny was three-weeks old, I was on the phone, telling the story of her birth to a friend. I had gone over all those details so many times by that point, it was a relief to ask her the question, "How are you?" She talked about their kids, and then moved on to the frustration of having a husband ...
I have a new post on Her.meneutics called "Eliminating Suffering or Eliminating People: When Genetic Testing Threatens our Common Humanity." It begins:
Imagine sitting in a doctor's office and receiving this news:
Good morning, Mrs. Santos. I have the results of the screening test you had last week, ...
Last week, I wrote about the differences between brokenness and limitation, a distinction that is common to us all. Two readers wrote back with their own experiences as friends with adults with Down syndrome. Both accounts demonstrate the complexities of these issues, and the need for humility before ...
I've written one final (at least for now) response in this conversation about disability and medical intervention. If you're just joining the conversation, this post is in response to Ellen Painter Dollar's piece, "I Want to Be Accepted As I Am, But I'll Take a Cure Too," which was written in response ...
Christianity Today has published a response to my recent article ("Considering Curing Down Syndrome with Caution") by my friend Ellen Painter Dollar. An excerpt from Ellen's response:
As someone who embraces the fallen-world narrative in explaining my own genetic disorder, I was caught up short by Becker's ...
As some regular readers of this blog already know, I have been following the blogosphere's treatment of recent research that indicates a possible way to increase the cognitive ability of individuals with Down syndrome. In response, I have a new article on the website of Christianity Today, titled "Considering ...
I have a new post on the BLOOM blog: "All Are Welcome Here" about our first experience on an "inclusive" playground. It starts:
"Architecture is evangelism." I heard it said in the context of church buildings. The speaker was making the point that a ramp at the back of the sanctuary might comply with ...
Some of you will remember this article from two years back, when I was pregnant from William and had an editorial published first for First Things and then the Philadelphia Inquirer. But in case you haven't read it before, here it is again: "All of Life is Fragile and Uncertain", published this time ...
I dropped Penny off at school this morning, and a mom of another little girl in her class pulled me aside. "Alli insisted on wearing sunglasses this morning because she wanted to be like Penny."
I turn around and there's Alli (not her real name), in her raincoat and hat and boots, on this ...
I'm part of a local network of parents of kids with Down syndrome, and we had a doctor from the Trisomy 21 Clinic at the Children's Hospital of Philadelphia come to speak to us last night. She answered questions about potty training and aggressive behavior and communication and school inclusion. At ...
My new friend Ellen Dollar is looking for people to interview for her new book about faith and reproductive choices. Here's what she has to say about it:
My forthcoming book, No Best Choice: A Christian Perspective on Disability, Genetics and Parenthood in the Age of Advanced Reproduction (tentative ...
Lisa Belkin wrote about Down syndrome yesterday on her blog for the New York Times: "Should Down Syndrome Be Cured?" I submitted this comment:The language used from the title of this post through many of the comments implies that Down syndrome is a disease, a sickness that is currently incurable. ...
(I'm in the midst of writing final papers for the two classes I've taken this semester. The following thoughts were prompted by a paper for my class on Human Uniqueness from a Theological and Biological perspective...)
The Christian Church has a long history of determining that certain humans were more ...
Penny and I went to a birthday party yesterday, and I met another mom. She said, "I have a child with special needs, too." She pointed out the window. "My daughter is ten. She's the one with the walker."
Over the course of the afternoon, I found myself watching this woman's daughter, whom I will call ...
Ellen Hsu has written a narrative of learning that her son, Elijah, had Down syndrome. It is available here.
My comment (also posted on the other blog):
I also have a child with Down syndrome, a daughter, age 3 1/2. And we too were shocked to discover, upon birth, that she had an extra chromosome. She ...
This post appeared yesterday on the Park Forum, and the issues it raises are important enough to me that I wanted to repost it in its entirety here, with some additional questions at the end:
The title of the article gives away much of the content: Three Babies Aborted Every Day Due to Down Syndrome. ...
It's a refrain these days, "Penny, I am proud of you." I say it when she walks out of school with her thumbs up, an indication that she has made "good choices" today (this after a few days of bad choices, which included yellow paint smeared across her new white shirt, in her hair, on her cheeks...). ...
I suppose it is a right of passage for kids. Penny has come into the stage of asking "why?" about everything. A quick example:
"Where's Dad?"
"At work."
"Why?"
"Because he goes to work in the morning."
"Why?"
"Because he likes to teach."
"Why?"
And on it goes, until I give up.
As tedious as the conversations ...
NPR ran a story tonight: "Rethinking 'Retarded': Should It Leave The Lexicon?" (http://www.npr.org/templates/story/story.php?storyId=112479383).
I wrote a response:
"You're such a retard" implies, "you're acting the way I imagine someone with an intellectual disability would act." "That's so retarded," ...
There's an email that floats around, especially among those of us who have children or siblings or other loved ones with mental disabilities. It is sweet and endearing and describes an adult woman's love for her brother. Early on, she says his mental age is 8.
She goes on to explain what he does every ...