Help me unlock my mind;Profile;Hero Nightingale

28th May 1999 at 01:00
Hero Nightingale wants to compose music, express her thoughts in writing, create works of art, master the Internet, travel the world and help wipe out global poverty. That's a tall order for any 12-year-old. For a girl who cannot walk, speak or control her movements, it might seem impossible. Yet Hero has already achieved many of her aims and is now pleading for help from the education world to let her realise the rest. Hilary Wilce meets a Nightingale who is determined to sing

Hero Joy Nightingale may well be the most extraordinary 12-year-old in Britain. She is a brain-damaged girl, locked in a mute and useless body, and has not attended school since she was six. Yet she has set up an acclaimed Internet magazine and persuaded the Archbishop of Canterbury, television arts supremo Melvyn Bragg, and Canadian novelist Margaret Atwood to write for it.

She has won an international award for this webzine, travelled to Australia to receive the pound;1,500 first prize, called in on Africa and Asia on the way, and flown to New York to meet with Kofi Annan, the United Nations secretary general - another of her contributors.

She has studied at both the Royal College of Music and the Royal Academy of Music, asked and got the composer John Tavener to be her godfather, and now says her ambition is to be like the late Nobel peace prize winner Albert Schweitzer and make a difference to people's lives, probably by campaigning for better water supplies in the developing world.

"I want to write and do art and compose, but since I've been travelling I realise I can't just do that. I must do something to make life more comfortable and safe and fair for people. I was so terribly shocked in Tanzania and Bangladesh to find worthy, hard-working, nice individuals quite unable to get access to safe, clean water."

It was for a specific purpose that Hero asked The TES to come to her cottage home on the edge of Canterbury, close by Kent University where her father, David Nightingale, is the pro-vice chancellor. "Bluntly, I want your help to recruit new communication assistants," she wrote. "My LEA is your newspaper. A small feature about me would help enormously." Four pages of bullet points followed to back up her claim.

Hero is able to see and hear normally, but relies totally on her mother, Pauline Reid, who cares for her, tutors her, and acts as her "voice" by grasping her hand and interpreting her rapid alphabet of presses and waggles. She desperately needs the key worker and ancillary enablers which her statement of special needs says she must have, and for which Kent, her local education authority, is recruiting. But these posts are being advertised as low-paid, temporary and part-time, and will not, she says, attract the graduate-type applicants she must have to master her unique way of communicating and to keep up with her talents and ambitions. An advertisement placed by the authority last autumn got no response.

"People who know Hero know there's an awful lot going on up here," says Pauline, pointing at her daughter's head. "I feel I've been letting her down for years. I have no languages, I'm not a musician and numbers freak me out."

Relationships between the determined Nightingale family and the often slow-moving local education authority have been tangled and sometimes acrimonious for a long time. "The LEA lurch around in a sporadic way, but they don't seem able to take advice from people who know Hero," says Pauline. "She didn't even get a statement until she was nearly 10."

The local authority counters that the family has often blocked or deemed unsatisfactory attempts to provide educational support. In 1997 the Ombudsman ruled that Kent had failed for four years to make proper provision for Hero, although a recent Ombudsman's report on progress - or lack of it - since then has ruled in the authority's favour.

All this leaves Hero despairing of ever having the right sort of people to help her. "In my wildest dreams I imagine having someone who would be like a best friend, not someone just doing a job. I want to feel that even if we argue and so on we'd sort it out like you do in a family. I couldn't bear divulging all my innermost thoughts to someone who doesn't enjoy what I am doing. Mum eggs me on, rather than seeming indifferent. But then again, I would need to feel it's me, not me being imposed on. It's about me being helped to be me."

These words come, of course, not from Hero's lips but from Pauline's. Inevitably there have been some who believe they are the thoughts and words of the mother rather than the daughter. Some have also questioned whether the music she composes is fully her own. But John Tavener had no such doubts. Hero met him at a concert 18 months ago. He listened to her music, read her poetry - and last November became her godfather. He said: "We live in a cynical and insular world which cannot cope with her."

On first meeting, Hero seems a mass of disjunctions. An attractive, blonde girl, she sits in her wheelchair with one ankle resting on her opposite knee like any casual teenager. Her blue eyes fix her visitor with obvious intelligence. But the "locked-in syndrome" from which she has suffered since birth leaves her face expressionless and her arms and head flailing wildly. The only sounds she makes are random squeaks and raspberries.

Yet no sooner has all this registered than she is lifting the conversation beyond her disabilities. She has, she says, just received an e-mail from someone in Belgrade. "It sounds so horrible, the suffering there. They are occupying the bridges at night to try and stop Nato bombing. Did you know that?" Until she was six she managed to go to a mainstream primary school, where teachers told her parents she was five academic years ahead of her peers. But she became unsettled after her helper left, and her educational support has been piecemeal since.

She has always been musically gifted, and went at age eight to have tuition at the junior music department of the Royal College of Music. At nine she spent a year learning composition at the Royal Academy of Music. She describes composition as a liberating of the "din in my head". A tutor plays a particular note and follows her instruction on whether the next note should be higher or lower. In this way Hero has composed, among other pieces, a four-act ballet.

She has had music and art tutors work with her at home, but the frustrations of her situation plunged her into bouts of depressions - "wouldn't you be depressed?" - until the creation of her Internet magazine From the Window which opened up her horizons.

Then came her award sponsored by Cable and Wireless for Childnet International, a charity which promotes learning through the Internet, and the five-week round-the-world trip this spring, which her mother says has been "life-changing. She wanted to see the world and she saw it, and she didn't like it."

Hero says she wasn't prepared for the terrible poverty. "I felt as if I'd been hit." This, even though, "everyone was very, nice wherever I went. It restored my flagging faith in how nice people are." As well as the pound;1,500 prize , she won a return trip to Sydney. But she raised pound;12,500 in sponsorship which allowed her to visit four continents in five-weeks. Determined not to be a tourist, Hero met other disabled people in Tanzania and Bangladesh. She talked to schoolchildren on disability, and visited hospitals, refuges, orphanages and slum areas. "In Tanzania, people were so upset to see a disabled white child that they wanted to pray for miracles. There was a lot of laying-on of hands - and tears."

An infection meant three days in Sydney Children's Hospital on a drip - and a missed awards ceremony. But she says her disability "makes it easy for me to meet all sorts of people without looking so peculiarly inquisitive and impertinent. The abused street boys I met just saw me as a kid in a wheelchair, so it was easy to ask about them."

She came home through the United States and via the United Nations where secretary-general Kofi Annan urged her to campaign for clean water for the world's poor.

Hero's isolating combination of high intelligence and profound disability can make her seem overly adult for her years: "a pretentious and pompous crip child" as she describes herself on her webzine. But at times she sounds exactly like the child she still is. Her brother, Alaric, is, she says, "14 going on six-and-a-half" while she and her mother, although inevitably closely bound, fall out like any mother-daughter pair. "She gets upset if I don't talk to her. She worries I'm getting adolescent."

Watching mother and daughter sitting side by side, their two hands dancing together, is an extraordinary sight. Pauline understands the system can look "implausible", but points out that others have mastered it. Wendy Clarke, Hero's long-time occupational therapist, who has helped develop her communication system, steadies Hero's hand while she pencils letters on paper.

Alone, Hero is unable to write and cannot operate a keyboard. "Pauline has dispensed with the pencil and paper and finds it quicker to work with Hero just by touch," says Wendy. "But I still need it, and this is the way a helper would start to work with her.

"Hero has quite large involuntary movements, so the enabler damps these down and allows the quieter movements to come through. Her classroom helper at primary school managed it in three weeks, and her playgroup assistant could also do it."

Beyond that, Wendy says, helpers need to be patient and quiet enough to allow Hero's personality enough space. "They must not finish words for her, or sentences. She hates that."

For Hero, finding the right people is central to her ambition "to be much happier than I've been in the last few years", and to counter the scepticism she has encountered about her abilities.

"Don't write anything horrid," she pleads, at the end of the interview. "Please don't write that I'm not me."

From The Window: l The next Childnet International awards 2000, sponsored by Cable and Wireless, are launched today. Details on www.childnet-int.orgawards

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