Monday, January 5, 2009

Sister's memoir tells how she and her disabled sibling enriched each other's lives

From The Salt Lake Tribune:

Growing up in the Salt Lake City of the 1950s with her mentally disabled sister, Irene, Terrell Harris Dougan (pictured with her sister Irene) received the full range of joys and frustrations that came with it. She harbored a secret guilt about her sister's condition, endured her sister's pesky questions about the boys she dated, and even had the odd chicken hurled in her direction while shopping for groceries. All that and more are recounted in Dougan's book That Went Well , published by Hyperion for release next month.

How is the task of writing similar to raising a mentally disabled sibling?

"I got two blessings in both growing up with her and writing this book. People came out of the woodwork. New stories came out of the woodwork. It was matter of surrendering to it and saying, 'OK. Let's go.'?"

As described in the book, your father was perhaps the first in Utah to ask parents
to organize during a time when it was almost shameful for families to admit having a mentally disabled child. To what extent did you want this book to stand as a historical record of how things had changed?

"I definitely wanted it to stand as some sort of record. While it has a local setting, there was the context of a national experience and growing awareness of these people's needs.

"The warehousing of the past is what shocks people most. It's been years since the scandal of Willowbrook [a state institution for children with mental retardation in New York charged with unethical behavior]. Utah's American Fork facility was never like that, but the general neglect that went on always shocks people. Amazingly, there are institutions that have not been shut down, even though the average cost to the taxpayer to keep someone in an institution, at least in Utah, is $450 per day. It's around $250 per day to keep them in the community."

Your book is full of prescient remarks from your father about the future challenges of raising your sister. You remark at the end of your book that the "wounded willow" isn't as interesting as the strong locust tree in your neighborhood that replaced it.

"A song from 'The Fantasticks' says it best: 'Without a hurt, the heart is hollow.' That's the deal. When you have someone you're taking care of who is wounded in some way, you become half damaged by it, enraged, overprotective and mean to your friends. On the other hand, you become half enriched by it, because that hurt has opened your heart to compassion. There's a secret, too, among families who have a mentally disabled sibling or relative. It's the pleasures you get from little progressions and victories. They are so much more powerful than for people who
go about normal life. Those victories are a kind of secret."

To what extent does your sister Irene know about the book?

"She's absolutely thrilled. She's already signed many copies and given them to her friends."