Living Well with More: Learning to Love (or at Least Accept) My Kids’ Stuff

Graham Hill’s op ed about living well with less in last Sunday’s New York Times started like this: I LIVE in a 420-square-foot studio. I sleep in a bed that folds down from the wall. I have six dress shirts. I have 10 shallow bowls that I use for salads and main dishes. When people [Read More…]

Taboo Stories About Disability: What We’re Not Allowed to Say

Last week’s New York Times featured a story about Joshua Miele, who at the age of four in 1973, answered the door of his Brooklyn home to a man he recognized as a neighbor. The man, for no reason other than his disordered thinking due to mental illness, threw acid into the boy’s face. A [Read More…]

When Conflicting Stories Are Both True: Illness, Identity, and the Tales We Tell of Living with Disability

In his vast and gripping book, Far from the Tree: Parents, Children, and the Search for Identity, journalist Andrew Solomon discusses the two narratives that we use when we talk about life with disability in general, and/or with particular conditions, such as dwarfism, deafness, Down syndrome, autism, or my own genetic disorder, osteogenesis imperfecta (OI). [Read More…]

Bless Those Who Curse You (& Don’t Call Them Eugenicists, Moral Monsters, or Murderers)

A friend recently sent me an article written by an Australian man who has the same bone disorder I do (osteogenesis imperfecta, or OI). Writing for the Christian journal First Things, Philip C. Burcham tells a compelling story of his family’s OI history. Seeking promising new treatments for his daughter, who inherited OI from him, [Read More…]

How the Story of a Surrogate, Expectant Parents, and a Baby Reveals the Pitfalls of Repro Tech

Fundamentally, it is simply a sad story, one that took place just a few miles from where I live, in the hospital where I gave birth to two of my own babies. As CNN reports, Connecticut resident Crystal Kelley agreed to carry a baby for a couple who had three children and wanted a fourth. [Read More…]

The Dangers of “Solutionism” Applied to Our Always Less-than-Perfect Children

In the New York Times Sunday Review yesterday, Evgeny Morosov defines “solutionism” as “an intellectual pathology that recognizes problems as problems based on just one criterion: whether they are ‘solvable’ with a nice and clean technological solution at our disposal.” Observing that “Silicon Valley’s technophilic gurus and futurists have embarked on a quest to develop [Read More…]

Adam McHugh’s Meditation on Life, Death, and His Hospice Work

Good morning friends. I will be back with some original stuff of my very own next week. I’d like to end this week with one more link to a colleague’s post. I first got to know Adam McHugh (as much as one can get to know someone solely through Facebook, blogging, and emails) because of [Read More…]

Mourning Clothes: A New Retro Clothing Trend?

One of the best things about having very talented writing colleagues and friends is that when I’m taking a few days of from posting original content here, I can always find great material to which to link. As I continue to take this week to work on other projects, here’s another gem for you to [Read More…]

Katherine Willis Pershey’s “Open Letter to My Evangelical Friends”

I am still pondering article proposals and book ideas and the wealth of wisdom and advice I gained from a mere 30 minutes with Stanley Hauerwas last week. (Short summary: We are both passionate about the different stories people and our culture tell about life with genetic conditions and disabilities. We both spend lots of [Read More…]

Blog Temporarily Closed for Pondering (and Hauerwas)

One of the biggest struggles with being a writer who blogs is that the time and thought required to post regular blog entries can make it difficult to give adequate time and thought to other writing endeavors. I have some ideas percolating for possible print articles and even a couple of book ideas, but they [Read More…]

My Cancer Playlist: On Wallowing, F-Bombs, and How We Suffer

This is a slightly edited version of a post originally published in July 2011 on my former blog. I thought it worth a revisit given that Mumford and Sons’s popularity has exploded since I wrote this post (such a cultural bellwether I am), and that some readers are taken aback when I occasionally use profanity [Read More…]

Should We All Give Up Reading the Comments Section…Forever?

Two of my friends, both of whom are writers with plenty of experience in the comment section trenches, have given up reading comments for Lent. Another friend with years of writing/blogging experience ended an email offering me some advice on a sticky professional situation with this nugget: Do your best not to read comments. Not [Read More…]


CLOSE | X

HIDE | X