Disability

Stories, theology, and cultural commentary related to disability.

I Tested and I Terminated and I Do Not Regret by AnonymousOne mother's story of a prenatal diagnosis of Down syndrome that led her to choose termination.

I should begin by thanking the anonymous contributor who was willing to share her story, an unusual one for this blog, about choosing to terminate her pregnancy after a prenatal diagnosis of Down syndrome. As I wrote yesterday, I ask readers and commenters to be honest and gracious in responding to ...

Prenatal Testing and Abortion--Is it Possible to Be Biased but not Judgmental?

I released an ebook (What Every Woman Needs to Know About Prenatal Testing) two weeks ago about prenatal testing. It covers my own experience of prenatal testing as well as providing information for women who are trying to figure out their own approach to testing. It's a combination of story, ...

Doctors Need to Understand Their Patients When It Comes to Prenatal Testing by Nancy IannoneWhen a patient says she doesn't want to terminate her pregnancy, doctors need to stop offering termination. Nancy Iannone shares her story and advice for medical professionals.

As a part of a series on personal experiences of prenatal testing (see Why I Wish I Had Chosen Prenatal Testing and I Regretted My Amnio), in concert with my new ebook What Every Woman Needs to Know About Prenatal Testing, Nancy Iannone shares her experience today and advice for doctors on how to respect ...

If You are Pro-Life, Should You Pursue Prenatal Testing?Every pregnant woman will be offered prenatal testing for some genetic conditions. What should you do?

The American Congress of Obstetricians and Gynecologists now recommends that doctors offer all pregnant women prenatal testing, which can detect chromosomal conditions like Down syndrome before their babies are born. As a result, they all face a decision, or a series of decisions, on what to do.

Although ...

Worth Reading: on Prenatal Testing and the Meaning of Life and what they have to do with each other

Two articles worth reading. One, a Wired Magazine take on prenatal testing: This Simple Blood Test Reveals Birth Defects–And the Future of Pregnancy, and two, an Atlantic essay: There's More to Life than Being Happy. The Wired article describes a woman's decision to end her pregnancy ...

I Regretted My Amnio by Meriah NicholsOne mother's description of discovering who her daughter really is...

On Tuesday, I began a series of guest posts in which women reflect upon their prenatal testing experience. Patti Rice shared Why I Wish I Had Chosen Prenatal Testing, and today Meriah Nichols offers the opposite perspective:

I.

The beginning of my pregnancy with Moxie feels jumbled, as I recollect it ...

Why I Wish I Had Chosen Prenatal Testing by Patti RiceOne pro-life mother reflects on why she wishes she had known prenatally that her daughter had Down syndrome.

Patti Rice is my first guest in what will be a series of guest posts to hear from women who have had a wide range of experiences with prenatal testing. Check back in on Thursday for Meriah Nichols, who writes about why she regrets her amniocentesis, and next week to hear from a woman who decided to ...

Imagining Down SyndromeThe prospect of disability often cuts off the possibilities of imagining a good life, not necessarily because a good life is impossible, but because a good life with a disability is unknown. Two stories that help us imagine a good life with Down syndrome...

One of my projects as a writer, in broad terms, is to argue on behalf of children with Down syndrome and other disabilities. Another project is to help people imagine what life with a child with Down syndrome might be like. I assume that when I tell stories about Penny and our family people know that ...

What do Down Syndrome, Abortion, and Baby Girls Have to do with One Another?"Statistics also suggest that at least 50% of all fetuses with Down syndrome in the US are aborted. That rate becomes higher among women who have a prenatal diagnosis of DS (probably 70%) and higher still when talking about other Western nations (90%). So, while being born a girl in Asia is not exactly the same as being born with Down syndrome here, I wanted to suggest some parallels."

When I write posts for other sites, I generally avoid the comments sections. Some longtime readers might remember a post I wrote for Motherlode over two years ago in which I explained why I wasn't screening my pregnancy for Down syndrome. Nearly 200 comments later, I was worn out as I realized how differently ...

Why Should You Care About Prenatal Testing?What people are saying about my new ebook about prenatal testing, and why you should read it too.

As I mentioned yesterday, I've written a new ebook about prenatal testing (info on how and where to purchase it at the bottom of this post). For the next few weeks, this blog will center around a host of questions, stories, and opinions related to prenatal testing. I've written a series of essays related ...

Ebook and Free Book and a New Website to Boot

Three fun things to announce:

I am delighted to announce the publication of my long-awaited (at least by me, since my original deadline for this thing was last June!) ebook about prenatal testing. This book is designed not as a medical guide to options or as counsel for women who have received a prenatal ...

When Turning Four Means a Death Sentence: Russia, Adoption, and Down syndromeOur friends are trying to adopt a boy with Down syndrome from Russia, but he may end up in an institution and doomed to an early death. Is there any hope?

Friends of ours have been trying to adopt an orphan with Down syndrome for years now. In order to protect their tenuous status as adoptive parents, I can't go into all the details. But I can tell you that they have prayed for their son, they have filled out form after form after form, they have raised ...

When Your Twin Has Down Syndrome and You Don't (Perfectly Human by Vicki Vila)"...what does it really mean when your missing puzzle piece, your twin, has Down syndrome, and you don’t? This will either be a most irrelevant question in my young daughter’s life or a most important one, and I may never know which."

"Mommy, do I have Down syndrome too?"

My four-year old daughter asked me very matter-of-factly, without fear or expectation, only with curiosity. She does not, in fact, have Down syndrome. Or maybe she does, in the sense that it will forever be part of her identity as a fraternal twin.

Her other half, ...

What Penny's Birthday and Epiphany Taught Me About Who We All AreI look forward to the mystery unfolding before me in each of my children

I don't mean to put my children in boxes, but every so often I catch myself. I have wrapped them up, hemmed them in, put a bow on top and presented them to the world as if I can contain what is inside. As if I can predict who they will be or what they can do.

I should have learned by now. In ...

Is There Reason to be Averse to Down Syndrome?I started to write about medical problems and the social construction of disability. But I ended up back where I always go, to Penny. And she answered the question better than any philosophical ideas ever could.

A few weeks ago, I asked, "Is Down syndrome Abnormal?" Although that post focused upon the reasons we might or might not want to use the term abnormal to describe Down syndrome, it led into a conversation through the comments section about whether or not there is any reason to fear having a baby with ...

Investing in Hope

When Penny was born and we found out that she had Down syndrome, one of my earliest emotions was fear. In time, some of my specific fears abated. She didn't have any serious health problems or physical complications as an infant. We lived in New Jersey with easy access to the Children's Hospital of ...

Is Down Syndrome Abnormal?I don’t want to change the words, but rather tell a story that might contribute to changing the culture.

ab·nor·mal [ab-nawr-muhl]

adjective

1. not normal, average, typical, or usual; deviating from a standard.

A friend of mine recently edited my forthcoming ebook (What Every Woman Needs to Know About Prenatal Testing, Patheos Press) to help ensure medical accuracy, and he suggested I replace the word "abnormality" ...

Perfectly Human: My Perfect Life by Nancy Jo SullivanOne mother reflects on the pirfectly imperfect life of her daughter, Sara, who had Down syndrome. (Plus a book giveaway)

**Leave a comment on this post for the chance to win a copy of Nancy Jo Sullivan's new book, Small Mercies. I will announce the winner on Monday, November 26th.

What does a perfect life look like?

When I ponder this question, thoughts of Sarah come to mind.

She was born on a snowy Minnesota ...

Perfectly Human: One Wonderful Life by Lisa WoolseyWith global developmental delays, you might expect Nora to be described as disabled. Her mother gives us all reason to describe Nora as wise and compassionate beyond her years...

My husband and I live in Michigan with our two children, Joshua (7) and Eleanor "Nora" (6).  When our son was born everything was perfect. I loved reading the "What to Expect in the First Year" book because Joshua met and exceeded every milestone. He talked early, walked early, and has continued on ...

Ann Coulter, the R-word, and John Franklin Stephens' Wise ResponseLast week Ann Coulter called President Obama a retard. John Franklin Stephens, a 30-year old with Down syndrome, responded with grace and truth.

Last week Ann Coulter sent media ablaze with a short tweet in response to the presidential foreign policy debate: "I highly approve of Governor Romney's decision to be kind and gentle to the retard." Her tweet has been favorited and retweeted by both supporters and detractors thousands of times since. ...

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