October 2013

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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 ...

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 ...

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 ...

Are there any Christians who take a day of rest anymore? Some Reflections on Andy Crouch's Playing God: Redeeming the Gift of PowerAndy Crouch's new book, Playing God: Redeeming the Gift of Power, challenged me and encouraged me in many ways. And it reminded me that I want laughter to be a hallmark of our Sundays.

Yesterday was Sunday. I think of it as the Sabbath, even though I know that the Sabbath is a Jewish observance that typically happened on the last day of the week, Saturday. But still, from what I understand, Christians co-opted the Sabbath and moved it to the first day of the ...

Quick Reads for the WeekendArticles on women, Down syndrome, motherhood for your reading pleasure

I hope to offer a reflection on Andy Crouch's Playing God on Monday. For now, I will simply say that if you are interested in culture, sociology, and the Christian story, this book is for you. And in case I haven't been clear about it already, Kate Braestrup's Here if You Need ...

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 ...

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 ...

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 ...

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 ...

Best Play Date Ever: Down syndrome, fear, friendship, and hopeWhy has my fear that Penny wouldn't make friends continued all these years?

One of my biggest fears for Penny when she was diagnosed with Down syndrome was that she wouldn't have friends.

The other fears I had in the hospital all those years ago have dissipated. Some–like my fear that I wouldn't love her as she continued to grow up–seem laughable now. ...

Where Pro-Life and Pro-Choice Can Agree, and other things I'm reading this weekMy book review for Christianity Today, plus what I'm reading and tweeting this week.

I have a new post on Christianity Today's website this week, a review of Rachel Adam's new memoir, Raising Henry: A Memoir of Motherhood, Disability, and Discovery. To read it, go to A Mother's Love for a Modern-Day Miracle: Meet the pro-choice secular Manhattanite whose study ...

Sam Was a Gift to Us: A father reflects on medical advances, trisomy 18, and human fragilityPhilosophy Professor Aaron Cobb reflects on the life and death of his son Sam, who was born with trisomy 18, and what that might mean for research to silence trisomies: "we should consider whether these new techniques will heighten the fearful tendencies that push us into desperate and despairing attempts to immunize ourselves and our children from our fragility as humans."

My son, Samuel, died five hours after his birth; he had trisomy 18. The five hours my wife and I spent with him were some of the most significant of our life together. They were a gift to us at the end of difficult pregnancy and a peaceful entry into the long paths of grief.

When Science Fiction Becomes Science Fact: Reflections on Flowers for Algernon and my Daughter"Does anyone have the right to change who people are intrinsically, to change a person’s identity and identification? To think that a person’s intelligence defines who they are and how they contribute to their community?" Blogger and mother Gary Bender reflects.

This post is one in a series addressing the question of whether we should try to "cure" Down syndrome. Margaret (Gary) Bender reflects upon Flowers for Algernon and her daughter Alex, who has Down syndrome. 

I have a vivid memory as a fourteen-year old sitting on my parent's ...

A Few Thoughts on the Bioethics of Space CowboysBlogger David Zahl considers pop culture and curing Down syndrome: "In addition to scientists and parents, priests and politicians, we would do well to consult our storytellers and poets, to examine not only our conscience but our imagination as well."

As a part of a series of posts in honor of Down Syndrome Awareness Month, and in response to recent media reports about a potential "cure" for Down syndrome, blogger and minister David Zahl contributes an essay today about bioethics, science fiction, and what it might mean for ...

Why Down Syndrome Matters to YouWhat effect would a "cure" for Down syndrome have on our culture at large? What would it communicate about what and who we value? About what and who we are and want to be?

I didn't think much, if at all, about Down syndrome before our daughter Penny was born. But in the seven years since her arrival, I have come to believe that disability, including Down syndrome, offers a window into the human condition that bears close attention. As I have written ...

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