Expressions From Her Window:

Hero Joy Nightingale Tells It Like It Is

By Jenna Glatzer <Jenglatzer@aol.com>

She edits an award-winning e-zine of poetry, travelogues, and experiential writing.

Not bad for a 13 year-old girl.

When she was eight years old, she attended the Royal Academy of Music in London to study music composition.

Not bad for a girl who can't talk.

From January to March this year, she traveled from her home in Kent, England to Australia, Tanzania, Bangladesh, and the United States.

Not bad for a girl who can't walk.

Hero Joy Nightingale's medical condition is unique. She gets around in a wheelchair, cannot gesture or change positions, has infantile reflexes that lead her to reach out for items on the stove or put inappropriate things in her mouth, and she communicates through an individualized method of signing in which her mother supports her arm and "reads" what Hero spells out into her hand.

Her doctors call this a "locked-in" condition, describing the way Hero is trapped in her body. It isn't Cerebral Palsy or Multiple Sclerosis or Parkinson's Disease, though some of the symptoms overlap. It's something the medical community can only describe as a profound apraxia of her muscles and an unknown neurological disorder. In addition to her physical limitations, Hero is often wrought with high fevers, urinary tract infections, diarrhea, epileptic seizures, and assorted illnesses.

However, locked into that body is the mind of a prodigy. Hero is phenomenally intelligent, and has ambitions to compose music and ballets, write poetry and prose, expand her e-zine, and act as a social activist "to ensure that some of the basic inequities of the world are eradicated". Sparked partly by her four-continent tour, Hero actively campaigns for adequate water supplies and drainage facilities in Third-World nations.

Does her condition ever get her down? Certainly. At age 10, Hero was clinically depressed due to a series of letdowns stemming from her disability. "I cried long and bitter tears the day I realized I was disabled, but since my disability mutes my voice, no one knew the significance of [that] day to me. All hope of talking, walking, being like my brother, drained." She explains that it hurts to need others to care for her. She is especially troubled that she cannot "unshackle the unceasing burden" from her "too busy" mother, the only person who can reliably translate Hero's system of signing.

Hero's depression lifted, however, when she discovered the Internet in 1997. "I leapt at the chance of contact with other disabled people," she told the Associated Press. She soon conceptualized, designed, and organized her own website, FROM THE WINDOW. Each issue includes a guest column from a celebrity, such as author Margaret Atwood, Archbishop George Carey, and Hero's favorite contributor, United Nations Secretary General Kofi Annan. Also included are "Collected Writings," "The Editor's View" (Hero's ongoing commentary) and "Pilfered and Filched" (interesting features found elsewhere on the Internet).

Hero, who describes herself as "obsessed with self-expression," did not plan for the attention this site has afforded her. When a visitor suggested that she apply for an award from Childnet International, Hero initially dismissed the idea. However, when she noticed the prizes-a trip to Australia and some cash, to boot-she applied and won. The day she was notified, she realized that this trip could afford her a wonderful opportunity to travel; not only to Australia, but to three other continents, as well.

The journey was never easy, as special accommodations had to be made wherever she went for her basic care. She traveled along with her mother and her close friend Tom, who embarked on the trip as a "helper," but parted ways in silence, worn out from Hero's disability. Hero recalls his declaration that he didn't know if he wanted to be her friend anymore with sadness. "Five weeks in my company and I am no longer lovable--because of my disability."

Hero recognizes that her condition can be exhausting for others who must endure her poor impulses, shrieking, sickness, assisted toileting, and body spasms. However, she hasn't yet figured out how to "laugh it off" and accept her friend's rejection. She says that all disabled people "long to be accepted [as they are], but fear they may not be."

Hero sympathizes with all people who are wronged and not accepted in society. "I demand to be allowed to be me and to be treated justly and kindly," she declares. It doesn't appear that she'll be easing up on these demands anytime soon, and neither will her new legion of friends and supporters who delight in her web creation, FROM THE WINDOW.

Visit Hero's site at www.rmplc.co.uk/eduweb/sites/hojoy.

 

Jenna Glatzer is a freelance writer specializing in disabilities issues and human interest stories. She runs a website for writers at www.absolutewrite.com and can be reached at jenna@absolutewrite.com.

 


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