Disability
Stories, theology, and cultural commentary related to disability.
For those of you who have already read A Good and Perfect Gift, this post will seem quite familiar, as it is adapted from Chapter One. For those of you who haven't, our birth story with Penny was featured last week on designmom.com. And whether you've read it or not, go to amyjuliabecker.com and scroll ...
When Penny was diagnosed with Down syndrome, the doctors told us that she would have "mental retardation." I didn't really know what those words meant, but I imagined them as a shadow that would hover over every aspect of her development from there on. I assumed she would have trouble learning everything—from ...
A Good and Perfect Gift came out in September. It hasn't come close to best seller status, but it is trucking right along. I had a chance to talk with a book group about it (on the phone–we were technologically incompetent enough that we couldn't figure out Iphone's Face Time or Skype). I've had a series ...
Long time readers of this blog may remember that I used to run a weekly guest post called "Perfectly Human." The purpose of the posts was to offer first-hand experience of the common humanity of people with disabilities. I ran out of obvious contacts for a while, but recently a few people ...
Penny had surgery a few weeks back. It all went well. But in the recovery room, as Penny slept, with her hair matted to her head, an IV dripping fluid into her arm, her nurse started telling us about how the doctors often give different instructions to parents than they do to the nurses. "So then I ...
Lisa Belkin posted a really interesting piece about how having money relates to being a good parent: "Money is the Root of all Parenting." It's a great summary of a recent study that explains how difficult it is to try to raise kids in poverty.
In the same news cycle, I learned that a couple in Oregon ...
I'm working on an essay about recent developments in the national conversation about prenatal testing. I'm not quite done yet, but I thought you all would appreciate reading the conclusion of Joe Klein's essay in Time Magazine this week. Joe Klein is a political moderate who tends to vote for Democratic ...
Jeremy Lin has overturned assumptions about the ability of Asian Americans to play basketball. So has David Andrews, a teenager with Down syndrome who contributed (with a 40% 3-point throw percentage) to his team's district championship this year. To see him in action, click here.
And while we're at ...
I had a lovely conversation with Susie Larson for Moody Radio last Friday. Somehow in six minutes she got me to talk about being a perfectionist in college, the freedom Penny has offered to me as a mother, where is God in the midst of suffering, and what it means to receive one another as gifts. Click ...
When Bonnie Rochman was writing her article for TIME, she asked me (per her editor's request) to describe "what Penny can and can't do." Here's what I wrote in response:
I've been thinking all morning about how to answer your question. It's harder than you might expect because we don't think about Penny ...
I read a lot about prenatal testing, especially now that a company called Sequenom has developed a test that purportedly can definitively (well, with 99% accuracy) detect Down syndrome via a maternal blood sample as early as 10 weeks. Usually in the "mainstream" media, I read articles that herald advances ...
Reed and Aaron showed up at 11:00 last Sunday, just as we were getting home from church. They left around 5:00. Six hours of zooming in on our family life–eating Sunday brunch, reading on the couch, heading outside for a walk. We had no idea if a photo of our family would be included in the magazine, ...
I woke up this morning because Penny came barreling into our room. "I want to cuddle with you, Mom," she said, glasses perched on her nose, wearing her footed pajamas, a barrette already in her hair to pull back the bangs she's growing out.
I tried to convince her to let me go back to sleep, but I finally ...
There are weeks when I can't help but write blogposts, and then there are weeks when my brain is too frazzled to put two sentences together. This week is one of the latter. William has had a fever. We have a new babysitter. Peter stayed home sick yesterday too. We're gearing up for Penny's surgery. ...
Some of you remember that Penny took ballet when she was 4. You might have read about her recital (Ballet Recitals, Carelessness, and Grace Part One and Part Two). It's a long story, but she's just really started dancing again, and I wrote about this renewed joy for the "My Great Story" feature of the ...
Number one on my list this week, because it combines individuals with disabilities, families, adoption, hope, and some amazing dogs: "Wonder Dog" from the New York Times.
Number two, because it is a beautiful meditation on aging and being young, and because my beloved 91-year old grandfather broke his ...
Cary Umhau, co-creator of a very cool website (and more) called Spacious, has written twice about A Good and Perfect Gift this past week. In her first post, "People with _________ just aren't my thing" she challenges herself, and her readers:
What I had to wrestle with while reading this book is this: "What ...
A few articles/posts/essays I've come across lately that you might enjoy:
My Brother's Valuable Life, by Cal Thomas, a reflection upon the value of his brother with Down syndrome: "No life is a failure when it causes so many to care for others. At that my brother succeeded magnificently." ...
I have a new article on parents.com: How to Raise a Child with Down Syndrome: Advice and Resources. I hope it offers a positive, brief, and accurate introduction to Down syndrome, particularly for parents with younger children. It begins:
Down syndrome occurs in one of 691 births, or 6,000 births per ...
Amelia Rivera has made the news this week because her parents wrote a blogpost about doctors denying Amelia a kidney transplant on the basis of Amelia's "mental retardation." After an internet uproar, that decision is under review. Lisa Belkin has written about this story for the Huffington Post, and ...