Hero Joy Nightingale

By Lisa Bendall

"I have very little idea what goes on in the heads of other people. I deduce some people don’t think much and I deduce most people lap up rather than pour out stuff but I’ve no particular notion that I’m any different from any other proactive sort of person. Something needs to be done, one does it. Simple."

This is the "stuff" poured out by Hero Joy Nightingale when asked in an interview for a German teenage magazine where she gets her
creative inspiration. Hero Joy -- playfully known as "Hojoy" -- is a poet, a musician, a writer, an artist, an advocate. Living in Canterbury, England, she is editor and founder of From the Window, an award-winning Internet magazine that has showcased world-renowned guest contributors such as Margaret Atwood and Kofi Annan. Her editorial columns are clever, chatty, challenging. And her poetry is simply magical, as evident in her description of being at her favourite seashore: "In my element of breezing sunlight, wild empty quiet space, the ocean gently
lullabying song into fragrant wind / soul winging free."

Hero is also the composer of ballets, choir and chamber music, music that she claims used to "dominate my every thought" until she could get the overpowering sound out of her head and onto paper.

Another thing about Hero Joy Nightingale: She is just 13 years old.

Stunningly articulate, Hero has a piercing wit and yet is graciously forthcoming. She claims to be a "pretentious and pompous crip child" but her self-deprecating humour (one of her web pages is still under construction because "I am absurdly idiotic") belies the assertion. She says she doesn t fit in with her peers, but thousands of individuals from almost 100 countries around the world have responded to her Internet site with salutations and congratulations.

From the Window was established in 1997. It bills itself as "a non-commercial Internet magazine following a quiet path away from the soundbites and manic zing of mainstream net, promoting understanding of the breadth of common human experience, celebrating a joy in language..."

Currently posting its seventh issue, From the Window s travelogues, articles and poetry cover topics from the Arctic to sacred music to the trauma of miscarriage. Contributors hail from around the globe -- famous and unsung, male and female, young and old, with and without disabilities. "It satisfies my insatiable inquisitiveness," Hero says, "nosing into the lives of other people. I adore hearing details of similarities and differences, whether cultural or personality."

Hero has been the focus of worldwide media and even school projects since her e-magazine captured first prize in the Individual Category of the 1999 Cable and Wireless Childnet International Awards for innovative communication projects.

Hero, who has been out of conventional school since the age of six, was originally set up to access the Internet by her local education authority (LEA) with the intention that she connect with other people with disabilities. "But I yearned to do more than chat," she says, "and I enjoyed considered prose, not news from chums."

The Internet’s huge potential gave her a new challenge. "It’s fun fun fun," she says. "And I rather like the anarchical elements in it too, dancing to my own tune, no one else’s, making my own rules."

On the Internet, Hero goes pluckily public with some most personal feelings. A quick browse through her personal website offers the reader glimpses of family photos, emotion-laden fragments of poetry, and a synopsis of a sometimes very difficult childhood that included two bouts of clinical depression when her extraordinary intellectual gifts were not nurtured or recognized.

As a baby, Hero was diagnosed as having an unknown neurological disorder. She had locked-in syndrome: She couldn t move most of
her muscles, and at the age of two she had the sudden realization that she probably would never talk, either. "It was the moment when I feel as if I grew up and stopped believing in fairness," she has written. "I had to grasp this reality all by myself and deal with it. No one knew I was thinking it. This is the nature of my disability. This is what is meant by a locked-in syndrome. I cannot even yell my hurts out."

She could, however, make her intentions "felt" by her mother, who held Hero on her lap much of the time and noticed her daughter
trying with slight, subtle movements to manipulate toys or turn the pages of books. With these subtle movements Hero communicated by indicating symbols on picture boards. At age four, when Hero was offered an alphabet instead of pictures, she was so excited to start spelling that she "lurched forward and tried to hit the paper." Words opened up a new world for her, limitless options for expression of ideas.

Eventually, instead of pointing to letters, Hero progressed to scrawling them into the hand of the person supporting her arm (her "enabler"). This is how she continues to communicate today, and the method by which she is able to produce her engaging webzine.

It became obvious that Hero was gifted as early as 13 months of age, when her therapists noticed her ability to concentrate and respond to language. "By age three," says her mother, Pauline Reid, "she would sit absorbed in drawing for up to 45 minutes at a stretch, and intended her drawings to communicate mood, desires and understanding." By four she was spelling.

Yet Hero has not been in school since the year she was six, ensnared in a classroom where her peers learned to add while Hero yearned to learn about such concepts as infinity and animal consciousness. Intellectually starving, "I ran into my imagination" and composed her first four-act ballet, refusing to participate in class activities and effectively shutting down: "I was somewhere beyond reach in a world of aloneness and tears." Hero stopped communicating and eating. She was in a state of clinical depression.


The local education authority issued a Statement of Special Education Needs that indicated the school could not meet all of Hero’s needs and permitted her to be schooled at home. "She did not greet the news with glee," says Pauline. "She didn’t want to be different, she wanted to fit in. She was aghast that she didn’t and hasn’t, that her path through life is so individual."

"I was cast adrift into a world of one and uniqueness that I couldn’t escape from," Hero adds.

The years since have been an intense struggle as the LEA continued to try to find a place for Hero, giving her assessment after assessment, stalling its decisions, switching her psychological treatment from her trusted practitioner to a total stranger, and baffling the family with terrifying plans (successfully contested) to send Hero away to residential school. "I never knew so much paper-pushing drivel... I hate them," Hero
declares without compunction. Currently, the school authority allows her three hours of art tutorial and two hours of hydrotherapy weekly. "I’d do better if they handed me a budget and let me organize my own life," says Hero.

A highlight of her academic career, however, was acceptance into the Royal Academy of Music (RAM) in 1994, where she was able to
mix with her "social and intellectual peers" while she "relieved the din of music within my noodle." While there, Hero composed songs and chamber music and enjoyed a midsummer jamboree in her tutor’s backyard. This was one of "two big up-times in my life" -- until the RAM suddenly tossed her out two years later. Hero suspects that they began doubting the source of her musical compositions. At this point, her mother Pauline was Hero’s only enabler and communication vehicle. (Pauline "not merely is a non-musician but o dear me, "writes Hero," once famously remarked that she would never go to a ballet because she had no interest in such stuff.")

Hero’s rejection from one of the most accepting environments she had known pushed her into her second clinical depression, and it was only her introduction to the Internet that gave her new optimism and drew her out again.

"I have to admit," says Hero, "that I have a yearning to be famous because I am so scared by scepticism. I think that if people know the facts about me, my implausibility diminishes, and I hate scepticism so very much."

She adds, "It’s so easy for people who don’t have to live with me to hurt me inconsolably. I love feeling encouraged. I love feeling the effort’s worthwhile... I love to feel I can be useful. I fear I am not loveable as an individual." She grapples with the dichotomy of physical dependence and her incredible intellectual gifts on offer to the world.

Hero’s second "big up-time" came when she discovered she had won the Childnet International award for her magazine. Winners were
offered £1,500 plus accommodations in Australia for the awards ceremony, and Hero decided to extend the trip into a voyage around the world. "I simply couldn’t bear not seeing more," she says. "I’d not been outside Europe so I greedily thought why not a spot of Africa, Asia and America, as well as Australia?"

She is passionate about her travel experience, which took place in early 1999 and led her to Tanzania, Bangladesh, Australia and New York, where she even had a short meeting with U.N. Secretary-General and previous From the Window guest columnist Kofi Annan ("just because I asked for it and he said he’d be delighted").

The trip "has exhausted me," declares Hero, "so that I am still gasping like a bloated greedy naive fool wolfing down more than I can easily digest." She says she is now "changed. Unable to settle into being merely an artist. Turned unexpectedly into a fool with a mission and an uncomfortable conscience. Upset and rubbed raw by my encounters with poverty and disadvantage. Bolstered up by achievement and by the very many wonderful people I met along the way."

Back at home in her 200-year-old house in Canterbury, Hero continues to live her now-teenage life with elements of normalcy-- she worships her older brother, who currently thinks she’s a bit of a pain, and she begs her dad for a dog -- and the sublime -- she personally answered 3,000 friendly letters in the last three months. She also heard from one less-than-pleasant individual who asked her caregiver to "pull the plug on me." Hero also carries on with her multitude of projects, the latest being a commission to write a 45-minute monologue for BBC Radio 4
("That’s the serious one," Hero points out.)

Her mother Pauline admits that life with Hero Joy Nightingale is "exciting, unpredictable, challenging, rewarding, stressful, exhausting." But "of course I’m proud," she says. "She’s led me into some extraordinary things."

"I can’t help it if I sound big-headed," Hero says matter-of-factly. "I have to acknowledge my talents and make best use of them."

(From the Window can be viewed at http://atschool.eduweb.co.uk/hojoy/. Lisa Bendall is the Managing Editor of ABILITIES.)