||At the recent Disability Awareness Month observance are (from l) Sheila Monroe of OD, Dr. Derrick Tabor of NIMHD, guest speaker Kate Adamson-Klugman, Dr. John O’Shea of NIAMS, and Mary Okwaro and Hilda Dixon, both of OEODM.
At NIH, scientists study locked-in syndrome, but Kate Adamson-Klugman experienced it. Recently, the nationally known inspirational
speaker shared her insight during the 27th annual Disability Awareness Month observance on campus.
“Once unable to stand or speak, I now stand and speak for those who cannot,” she said.
After being stricken in 1995 by a double brainstem
stroke, she could do nothing at all, not even swallow. She found herself suddenly “in a glass coffin” hearing physicians say, “Should we unplug her?” She seemed dead to the world, yet her heart kept beating. Fully aware but unable to let anyone know it, she could only pray, “I’m in here! Please save me!”
Adamson-Klugman was 33 at the time and the mother of two daughters. She had started
a fitness training business and thought she would have declined heroic measures to save her life if she were ever to become disabled. For weeks she had been shrugging off a pattern of migraine headaches, but at last had scheduled a clinic appointment to ease her husband’s worry.
She was accustomed to a carefree style. “I once lived in a 5-bedroom home in an exclusive California
neighborhood,” she recalled. “I had it all. I knew the cost of everything and the value of nothing. Now I know the cost of growth and the value of each individual life. I am profoundly
grateful for each moment I live.”
Instead of having a routine clinic checkup that day, Adamson-Klugman ended up in critical care on life support. At one point she was pronounced
dead. Most frustrating to her, she said, was “when people would talk as if I wasn’t there. I could hear and see everything. I could feel everything. I could do nothing.”
Doctors told her husband she had “a less than one-in-a-million chance to survive.” Steven Klugman seized on hope. He insisted on all measures possible to sustain his wife, which would eventually require the teamwork of 15 caregivers. Klugman hung a sign above his wife’s bed: “This is a human being lying here. Please treat her as a person. She understands everything you say.”
The miracle began when Steve saw Kate blink. He tested her mental alertness by simple questions.
She mustered the effort to blink once for yes and twice for no. Then she began, with the aid of an alphabet chart, to blink-spell the word “home.” Steve suspended his law practice in order to keep vigil at her side, constantly prodding her to communicate.
Most painful to Kate was her inability to touch their daughters; the younger one, at 18 months, was starting to call a caregiver “Mommy.”
Gradually, over a period of months, Kate emerged from locked-in syndrome. She recovered her speech except for occasional aphasia. Her left arm and hand remain paralyzed, her ankles weak, yet with special braces she can stand again. Summing her experience, she declared, “In a blink, I was a person again.”
Adamson-Klugman has written two books about her experience and established
a web site. As a national spokesperson for the American Heart Association
and the American Stroke Association, she has appeared on numerous media programs nationwide. Magazines have featured her story as one that stirs hope-filled imagination and creative problem-solving.
As an advocate for the disabled, she wants to change the focus of EEO compliance
from its being perceived as a burden to a happy discovery of otherwise hidden capacities for doing good.
“The slogan of reasonable accommodation does not do justice,” she said. “It’s really a life lesson about our appreciating the potential of people who each have differing kinds of abilities. When we cultivate the things we can do, we are empowered to choose a better future.”
In her seminars, Adamson-Klugman offers such tips as: use language that addresses the individual rather than a disability; learn a person’s name and use it; apply “the Golden Rule” to center not on what you want, but what the other person needs. Also, it’s okay to notice a disability and even to ask questions about it. Be helpful but not condescending.
The event was sponsored by the Office of Equal Opportunity and Diversity Management
and has been archived as a videocast at http://videocast.nih.gov.