Stories, theology, and cultural commentary related to disability.
March 03, 2010
Our Daughter Penny and the Word Retarded
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 ...
March 01, 2010
Prenatal Diagnosis: What Would You Do?
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, ...
February 22, 2010
How Important is Independence?
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 ...
February 16, 2010
The Curses of Brokenness, the Blessings of Limitations
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 ...
February 12, 2010
Drugs and Down Syndrome
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 ...
February 09, 2010
All Are Welcome Here
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 ...
January 26, 2010
Fragility and Hope
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 ...
January 25, 2010
"I Want to Be Like Penny"
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 ...
January 14, 2010
What do Medical Students think of Down Syndrome?
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 ...
January 13, 2010
Faith and Choice
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 ...
January 12, 2010
So what exactly is Down syndrome?
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. ...
December 17, 2009
What Makes Us Human?
(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 ...
November 09, 2009
Talking about Disability, Talking about Ability...
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 ...
November 04, 2009
The Diagnosis of Down Syndrome
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 ...
November 03, 2009
Jesus and Down Syndrome
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. ...
October 09, 2009
Proud of You
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...). ...
October 07, 2009
I suppose it is a right of passage for kids. Penny has come into the stage of asking "why?" about everything. A quick example:
"Because he goes to work in the morning."
"Because he likes to teach."
And on it goes, until I give up.
As tedious as the conversations ...
September 04, 2009
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 ...