No Easy Choices When It Comes to Genetics, Disability, and Reproductive Decisions

book cover

TIME Magazine online picked up my post from earlier this week on whether a parent might regret bearing a child who inherits a difficult, painful genetic disorder. (TIME.com has a cooperative agreement with Patheos that allows them to select several Patheos posts every week for publication on their site.) The post is being shared widely, by [Read More...]

Can You Regret Having a Child Who Inherits Your Genetic Baggage?

Photo courtesy of Speak Up/Gerry Green

But while I sometimes wish I could have spared my daughter her genetic fate, I’m also profoundly grateful that it was not in my power to decide what kind of kid I would get. [Read more...]

A Letter to My 16-Year-Old Self

To my 16-year-old self: When people tell you that your scars are a kind of beauty mark, that they don’t even notice your physical impairments any more, that you are beautiful and loved, believe them. Believe them the first time they say these things, and every time after. [Read more...]

“Inspiration Porn” Objectifies People with Disabilities

Admire me for what I do—for writing well or raising decent kids or having a lovely garden. But don’t admire me just for existing, just because I live a mostly unremarkable life with scars and a limp and a history of dozens of broken bones. [Read more...]

A Broken Body, Redeemed

Eight years ago, when my three children were still very young, we traveled to Omaha for an Osteogenesis Imperfecta (OI) Foundation conference. Both I and my oldest daughter have OI, a genetic collagen disorder that causes brittle bones, short stature, and other symptoms. As we were checking in at the conference hotel, I glanced up [Read More...]

Resemblances

“Look at those fingers! And her toes! So long and skinny…just like yours, Ellen.” I don’t recall how many people uttered those words during the early weeks of my firstborn’s life. Maybe only two or three. But I felt bombarded by this innocent observation. Shortly after my daughter’s birth, my husband, who accompanied her for [Read More...]

Yes, We Can Change Cultural Assumptions About Disabilities. Here’s How.

Last night, I gave a lecture at the University of Hartford to students in a humanities seminar studying ideas of utopia and dystopia. I gave my usual talk about my story as told in my book, No Easy Choice, and included some reflections on how dystopian novels, particularly Lois Lowry’s The Giver, can illuminate the purposes and pitfalls [Read More...]

Philip Seymour Hoffman’s Death Scares Me for a Different Reason

shutterstock_12501715.jpg

The same medication that I take every day, in doses that would leave most of you passed out cold or hospitalized or dead, directly led to Hoffman being discovered in his apartment with a needle in his arm. [Read more...]


CLOSE | X

HIDE | X