NPR ran a story tonight: “Rethinking ‘Retarded’: Should It Leave The Lexicon?” (http://www.npr.org/templates/story/story.php?storyId=112479383). I wrote a response: “You’re such a retard” implies, “you’re acting the way I imagine someone with an intellectual disability would act.” “That’s so retarded,” a more passive usage, implies, “That’s messed up in a way that reminds me of people with intellectual disabilities.” And, in both cases, the implication is that it is a bad thing to act the way someone with an intellectual disability would... Read more

There’s an email that floats around, especially among those of us who have children or siblings or other loved ones with mental disabilities. It is sweet and endearing and describes an adult woman’s love for her brother. Early on, she says his mental age is 8. She goes on to explain what he does every day–gets up and gets dressed, eats breakfast, gets on the bus and goes to work. Does his job. Comes home in the evening. The point... Read more

I drive to the Emergency Room with William. I know the route now, due to Penny’s ER visit and subsequent hospital stay last spring, so I no longer have to worry about the unmarked roads and whether I’ll make a wrong turn in the “bad” part of Trenton. I drive past housing projects. I don’t see anyone outside. I wonder whether my car, a black Prius, is conspicuous. I don’t lock my doors. I wonder if I could be friends... Read more

She meant well when she asked. “How high-functioning is your daughter?” I didn’t think much of it as I replied, “Oh, she’s very high-functioning. Her intelligence is at an age-appropriate level. The developmental delays she experiences are related to motor skills. She can’t jump or run very well. She can’t whistle. That kind of thing.” “That’s great,” she said. And then the conversation moved on. But it got me to thinking. What would she have thought, if, when she mentioned... Read more

(I’ve written about this before, but I think it is worth mentioning again.) It happens all the time. Someone refers to my “Down syndrome child” or says, “They have a child who is Down syndrome,” or “She’s having a Down’s baby.” Or I read it in Time magazine or a newspaper article. Before Penny was born, I didn’t think twice about the language we use as a culture to talk about people with disabilities. But even when she was an... Read more

It was a few years ago, and Peter and I were talking about our relentless work ethic. We both work hard, at more or less everything, all the time. Why? For years, we had agreed when people told us that we must be striving for approval, yearning to please others through our efforts. But, quite frankly, even once I more-or-less got over my desire to satisfy others, even once I learned how to say “no,” I still worked long and... Read more

I recently read a story by Wendell Berry, originally published in the Atlantic’s Fiction Issues, 2008 (http://www.theatlantic.com/doc/200808/berry-stand). I commend the story on the whole, but I wanted to share this paragraph, which comes on the heels of the death of one of the characters: “…their absence puts them with you in a way they never were before. You even maybe know them better then you did before. They stay with you, and in a way you go with them. They... Read more

It’s tempting to let it go. But every day, usually three times every day, we clean up the mess. Dishes in the dishwasher. Toys in the basket. Food back in the frig. Dirty clothes in the laundry. I sometimes can’t believe that we will be back at the same place–sticky peach on my foot, diaper in the trash can, ketchup-stained clothes in the basket, blocks on the floor–in just a few hours. But even though it will come back, we... Read more

Peter and I watch TV the way other people go to the movies. We watch about once a week, always together. It is always an event. We pick one show at a time. Years ago, it was Survivor. Then The West Wing. Then Lost, interspersed by summer series to make up the long stretches without any new episodes. Last summer we blazed through two seasons of 24. This summer, we started watching The Wire. The Wire was an HBO series... Read more

A few nights back, I decided it was time to teach Penny the Lord’s Prayer. I was kneeling beside her bed, as I always do at bedtime. She sat up and put her hands together. “I’ll say a line, and then you repeat it.” “Otay.” “Our Father,” I started, but then interrupted myself. “Penny, did you know that God is our father just like Dad is your father, well, in a similar way…” My theological education started racing by–is it... Read more