Stories, theology, and cultural commentary related to disability.
; FamilyJanuary 28, 2014
Peeking Into the WombMy new post for her.meneutics about the purpose of ultrasounds in the modern age.
When I was 20 weeks pregnant with our first child, I chatted with a friend about our upcoming ultrasound. "We find out whether we're having a boy or a girl tomorrow," I said.
She nodded with a slight smile, and responded, "And you find out if your baby is healthy tomorrow. I ...
; FamilyJanuary 24, 2014
What's Your Favorite Spiritual Memoir? (and other reading notes)
Some book and article notes in a sec, but first: What's your favorite spiritual memoir? I'm looking for a good one. I've enjoyed Mary Karr, Anne Lamott, Martha Beck, and Kate Braestrup, to give you a sense of what I like. Any other favorites out there?
On the bedside table: I abandoned The Sun Also Rises ...
January 13, 2014
Why Does Our Culture Celebrate Down Syndrome?Why, at a time when more and more fetuses with Down syndrome are aborted, are we celebrating the lives of the children and adults growing up in our midst?
In an article for the Catholic World Report, Leslie Fain writes:
In the last two or three years, at high schools from Florida to Illinois, students have been forsaking quarterbacks and cheerleading captains and electing teenagers with Down syndrome to be homecoming kings and queens.Last year, Target ...
; FamilyJanuary 10, 2014
What I'm Reading and TweetingWhat's the most interesting thing you've read this week?
A few nights back, we thought all the kids were asleep, only to discover Penny under our covers, reading Love and Salt: A Spiritual Friendship through Letters, written back and forth over the years by Amy Andrews and Jessica Griffith. "This is a cool book," she told me. And although I'm certain the ...
; FamilyJanuary 03, 2014
Book Update and What I'm Reading and TweetingI've submitted my manuscript of Small Talk (hooray!) and here are some books and articles about faith and disability that might be of interest...
First of all, could someone please remind me that I should never try to submit a manuscript for a new book on January 3? I'm pretty sure my deadline for A Good and Perfect Gift was December 30th, 2010, and then I went and agreed to submit Small Talk today. The bad news is I got really stressed out about ...
December 30, 2013
Favorite Guest Posts of 2013Seven posts from 2013 written by others for my blog, all related to Down syndrome.
It's Penny's birthday today, and I'm sure I will have some thoughts about her to share soon, but for now, in her honor, here are seven guest posts written for this blog in 2013, all related in some way to Down syndrome:
Life with Down Syndrome in Zambia An interview with a mother of a child with Down ...
December 27, 2013
Favorite Posts of 2013Four of my favorite posts, written for PBS Parents, Chai Mamas, Huffington Post Parents, and the Atlantic, that I've written in 2013.
Today's list includes my four favorite posts I wrote for other venues:
How to Talk to Kids (And Parents) About Disability (for PBS Parents): Even though I have a daughter with Down syndrome, for a long time I didn't know what to say when we encountered other people with physical or intellectual disabilities. ...
December 16, 2013
Who Can You Not See?"But what I wish I had said, most of all, was, "Can you see my daughter?""
I wrote last week of an incident in which I realized Penny had appeared to be willfully disobedient, mean, and destructive (Happy Tears: Why I Believe in My Daughter). Based on what I already know about her and some gentle nudges from the Holy Spirit, I questioned that version of events. In time, by ...
December 10, 2013
Happy Tears: Why I Believe in My DaughterWhat would you do if you heard your daughter had run away, hurt a toddler, and scribbled on the wall of the nursery?
I kneel down. Penny and William are both in front of me on the couch. Both look a little puzzled by my tears. I clasp their hands. "Happy tears. Happy tears," I say.
It is Saturday night. A few hours before my happy tears, Peter and I are sitting in church for a special service to commemorate the ...
November 05, 2013
Man with Down Syndrome Completes NYC Marathon (and why this great news makes me sad)Jimmy Jenson's story inspires me. And it makes me very sad, because across the globe people believe that a life like his is not possible for their child.
It's a fantastic, made-for-TV, feel-good story. Jimmy Jenson, a 48-year old man with Down syndrome, completed his second marathon on Sunday in New York City. I have never run farther than four miles. This guy made it 26.2 miles. It's a tremendous accomplishment in and of itself, but Jenson's story is ...
October 31, 2013
What I've Learned This Month About Down Syndrome, Cures, Health, and FamilyA summary of the posts this past month in honor of Down Syndrome Awareness Month addressing the question "Should we try to cure Down syndrome?"
For the past month, in honor of Down Syndrome Awareness Month, I've invited a host of people–doctors, professors, mothers, fathers, and individuals with Down syndrome–to address a question that has come up across various news outlets in recent months: Should we try to cure Down syndrome? I began with ...
October 30, 2013
What Does it Mean to Be Healthy? John Swinton on Down Syndrome, Shalom, and MedicineProfessor John Swinton "The most hedonistic, intellectually astute athlete can be ill and in need of healing (restoration to right relationship with God) and the most deeply impaired individuals can be healthy and indeed beautiful."
I am grateful to Amy Julia Becker for the invitation to make a small, but I hope nonetheless useful contribution to this ongoing discussion. The question "Should Down syndrome be cured"? is certainly interesting and controversial. But I do wonder if it is actually the right question for us to ask. I'm ...
October 29, 2013
My Suspicions About "Curing" Down SyndromeAlison Piepmeier explains her suspicions about new research related to Down syndrome: "My description that I’m now trying to make into a catch phrase is that disability is an embraceable form of human diversity."
This week is the final week of Down syndrome Awareness Month, and therefore the final week of posts addressing the question of whether we should try to "cure" Down syndrome. Today we hear from Alison Piepmeier, Professor of Women and Gender Studies at the College of Charleston and mother of Maybelle. ...
October 25, 2013
A New Story for Down Syndrome"I wonder if there's any hope of entering an age with a new story, a story that isn't as dramatic as Heath White's or Chloe Ashton's, a story that doesn't rely upon an entry point of grief, a story that doesn't need the tension of transformation."
There's a video making the Internet rounds. It introduces us to Heath White, a father who didn't always love his daughter Paisley. Heath reads a letter in which he confesses that before Paisley was born, he urged his wife to have an abortion. Paisley was prenatally diagnosed with Down syndrome, and ...
October 24, 2013
Loving My Challenging Life with Down syndrome"My name is Tryn Miller, and I would like to tell you about growing up with Down syndrome."
I first met Tryn Miller online a year ago when I ran a series about Down syndrome and friendship. Tryn, who has Down syndrome, and her friend Anna, wrote about their relationship (For Tryn's, click here and for Anna's click here). When I started thinking about the question of whether or not Down syndrome ...
October 23, 2013
Missing Adam: One Mother Reflects Upon Her Son with Down SyndromeStephanie Brock reflects on her son Adam and Down syndrome: "...we want to cure Down syndrome because it's not self-imposed, and we chafe as humans against anything we didn't decide or do for or to ourselves. We want to cure disability because it's not the right kind of difference, or difficulty, or suffering."
This morning my middle son Caleb said he missed his brother Adam who has been at respite all week. Adam goes to respite periodically because Adam is classed as disabled. He has Down syndrome and Autism, and has recently finished two and a half years of hospital-based treatment for leukemia. One could ...
October 22, 2013
None the Same as the Other: Ethical Reflections on Eradicating Down SyndromeA guest post from Notre Dame Professor of Ethics Hans Reinders today: "Of course it can argued that [people with Down syndrome] at least have this one extra chromosome in common, otherwise they would not be identified as people with Down syndrome, but this observation tells us next to nothing about their lives. It does not inform the debate on whether humanity would be better off without DS in any significant way."
I am honored to share with you a guest post from author and ethicist Hans Reinders. As his bio attests below, Dr. Reinders has thought and written about ethics and disability for many years, and his thinking had a profound effect on my own understanding of the place of people with disabilities in our ...