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Archive for the ‘normal’ Category

The tyranny of normal

Saturday, March 22nd, 2008

In an interview on Wisconsin Public Radio, author Jonathan Mooney says our culture’s concept of normal is damaging to everyone, not just people who are identified as different.

Mooney, who had dyslexia and didn’t learn to read until he was twelve, is the author of “The Short Bus: A Journey Beyond Normal.” His book documents a four-month journey that he took around the country in a converted special-ed bus (the “short bus” of the book’s title.) Along the way, Mooney came to terms with his differences as he confronted his preconceptions about other people who have been labeled as disabled.

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‘Baby Miracle’ brought to Florida for surgery

Thursday, February 28th, 2008

From the Tampa Tribune, USA Today:

A baby girl who was born with severe deformities in Samoa and refused medical treatment in New Zealand has been brought to Florida for surgery with the help of THORN Ministries, an American faith-based group.

Miracletina Nanai, also known as ‘Baby Miracle,‘ is now six months old. (At left, with Kristin Taylor, left, and her mother, Mikaele Nanai.) Miracletina reportedly has deformities of the face, brain, spinal cord and palate, and is missing some fingers. After birth, doctors advised family and staff at the hospital not to feed her, but her parents reportedly snuck in milk and fed her with a plastic syringe when the nurses weren’t watching.

Because Samoa doesn’t have medical facilities needed to correct her disabilities, the country appealed to nearby New Zealand for help. But the New Zealand government denied the baby’s family an entry visa in December, saying there was no treatment that would benefit her quality of life.

Kristin Taylor, co-founder of THORN Ministries of Riverview, Florida, worked to get U.S. approval of visas and passports so the baby’s family could travel to Florida for up to six months. The approvals came after John Ragheb, chief of pediatric neurosurgery at Miami Children’s Hospital, and S. Anthony Wolfe, chief of the hospital’s plastic surgery division, agreed to provide medical services for the baby free of charge through the Child Foundation Inc.

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More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This blog attempts to explore what we know about disability, and to chronicle the efforts of people who are seeking new ways to address familiar challenges.

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