On living with disfigurement

Yesterday the story of Connie Culp, a face transplant recipient, was told. She was shot by her husband in 2004.

The blast shattered her nose and cheeks, the roof of her mouth and an eye. Hundreds of fragments of shotgun pellet and bone splinters were embedded in her face. She needed a tube in her windpipe to breathe. Only her upper eyelids, forehead, lower lip and chin were left. She endured 30 operations to try to fix her face.

Her message was one of gratitude to the donor and their family. She also spoke about her experience of living with disfigurement.

“When somebody has a disfigurement and don’t look as pretty as you do, don’t judge them because you never know what happened to them,” she said. “Don’t judge people who don’t look the same as you do. Because you never know. One day it might be all taken away.”

David Roche recently wrote in The Metaphor of Facial Disfigurement about his facial disfigurement, his inner journey and work in middle schools with a program called Love at Second Sight. His words about everyone's battle with living an integrated and full life are worth reading.

Here is the crux of it: everyone has the fear of being in some way defective, unlovable and unacceptable to society. That is the true disfigurement. The place deep inside us where that fear lives is where predators come to feed. I submit that there is another way of looking at facial difference-one based on the truth of human experience. The artistic metaphor of a scarred face can be one of personal integration. Every person must reach the point of self acceptance. That magical moment is the key to living an integrated and full life. A person with facial difference can represent someone who has lived through that moment.

Love at Second Sight is about appearance, acceptance, and diversity.

David has done a video talking about living with disfigurement and peoples' reactions - and about belonging.

'the second glance' from Nic Askew on Vimeo.

"Recoveries at burn units bring stresses, strong bonds"

Via USA Today. This article discusses the journeys of disabled vets going through recovery from burn injuries.

"Brooke's burn center also treats civilians. But these days there is a steady flow of wounded from Iraq and Afghanistan — more than 570 thus far, of which only about 6% have died. Many survivors, however, are permanently scarred. Some also suffer from blast-related wounds, such as head injuries or fractures. Others can't walk, cut their food or tie their shoes.

"We now have an entirely new population of burn survivors ... with oftentimes lifelong and life-changing injuries," says Dr. Evan Renz, a Brooke surgeon.

Some will recover. Others will learn new ways to become independent."

The article discusses some of the struggles with survival, suicidal feelings and conflicts the staff and patients deal with on a daily basis. However, its message is clear for those who do survive numerous surgeries, some as many as 30 or 40 (or more):

Get back out there.

Looking at Disfigurement from Burns

In this NPR piece, the writer covers a subject not often discussed - veterans returning from war with disfiguring injuries caused by burns and the treatment they receive in an Army hospital.

Please follow the label burn survivors for more information. If you are the parent of a burn survivor, you can find links to summer camp programs here. Also Support groups are available.


I found a piece over at belief.net under a column called Daily Inspiration. (I'm sure there are others but I was struck at how little coverage there's been of this despite the folks I've heard from online who are out there. However note the USA Today article in the post above.)

It's about burn survivor and disabled vet Aaron Mankin. He poses with his daughter in a photo over there. He speaks of his concerns for her about his disfigurement as she grows older due to society's reaction.

Mankin shares about waking up in the hospital:

"Then, my girlfriend Diana's face popped into my head...The first time I saw Diana three months later, I asked her to marry me. I didn't know what I was capable of as a husband or as a dad. I didn't know what I could bring to the table besides a burned face and scarred arms. My ears, nose, and mouth were gone, as were the thumb and index finger of my right hand. When she said yes, it was a turning point for me. Even though I had a right to be bitter and curse the world, it wasn't what Diana deserved. It wasn't the man she fell in love with.

It was a month and a half before I was ready to look at myself in the mirror. Then one day, I got out of my hospital bed to go to physical therapy and I saw the mirror I'd passed countless times, refusing to see the truth about how hurt I was. I looked over my left shoulder, and there I was—this torn up, frail, thin individual with open wounds on his face that I barely recognized, and my worst imagination became my reality. I cried.

Being a Marine, you want to tell yourself you're fine, just walk it off. But I couldn't walk this one off. I covered the bottom half of my face with my elbow, and looking at my eyes and my forehead, I didn't look any different. I knew inside I was still the same man. But not everyone would see that, and I was very concerned when Jake and Maggie, my little brother and sister, then 8 and 7, came to see me in the hospital. I was their big brother. I was in the Marine Corps. I was invincible. That's how they saw me, but I didn't know if they would see me that way anymore. So I asked Jake, "Do you still think Bubba (that's what they call me) is as strong and fast and tough as you used to?" Jake didn't think about it at all. He just said, "Yeah, I think so." And I looked at myself, and I was bandaged up and breathing hard, and I said, "What makes you think that?" And he said back to me, "Well, they tried to blow you up, and they couldn't."

Via belief.net

"The Wright Stuff"

Over at Disability Culture Watch, Simi Linton has yet another great post. (Click above).

This time, it's about a subject close to my heart - disabled veterans who need help as they navigate the system toward getting a college degree. Enter Dartmouth President James Wright. He wrote in a Community Letter to Dartmouth in February of this year that:

"Many of you know that I served three years in the Marine Corps. Since 2005, I have been visiting wounded Marines at Bethesda Naval Hospital. I have also gone to Walter Reed Hospital. I go bed to bed talking to these young men and women, all of them seriously wounded, and I always urge them to consider returning to school. I have not sought to recruit students for Dartmouth, but a week before Christmas when I visited I gave out twenty-five Dartmouth caps! I am always moved by their stories and inspired by their courage and sacrifice."

In her post, Simi Linton wrote:

"Wright started looking for a way meet these veterans’ needs. He contacted David Ward at the American Council on Education, who agreed to help develop the program. Wright helped raise $300,000 and this spring, educational counselors are working at Bethesda, Walter Reed and Brooke Army Medical Center. In the program’s first week, more than fifty veterans asked for appointments with the counselors and now about one hundred wounded veterans are being served."

Dr. Linton also writes about suggestions for educators to prepare the way for disabled vets - and improve conditions in general for pwd attending academia.