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The Nadia Effect

July 15, 2009

Nadia Clarke with her mother KatieNadia Clarke has done GCSEs and has been a Youth Parliament delegate. Inclusion, says her mother, Katie, ‘is a rocky road but it can be travelled’ Photograph: Christopher Thomond

In 1998, the Guardian told the story of Nadia Clarke, whose family moved across the country to find their bright but severely disabled daughter a place in mainstream education.

It was an admirable but depressing saga of the problems, and sometimes prejudice, that led the six-year-old’s parents to give up jobs, uproot their three other children and travel 100 miles from a sought-after village to a town with an iffy reputation for schooling.

“The headlines about Halifax at the time were all to do with trouble at the Ridings school,” says Katie Clarke, Nadia’s mother, while her daughter nips upstairs in her wheelchair lift in a teenage hunt for make-up. “But it wasn’t too long before Calderdale council was getting better stories in the papers. They were about Nadia.”

They deserved to be good, because the gamble that left readers in 1998 rooting for a brave spirit locked in cerebral palsy combined with deafness, has paid off, and handsomely. Nadia, now 17, comes downstairs again to talk about her GCSEs, her coming place at Calderdale college, election victory as the local youth parliament’s delegate to Calderdale council, and a conference she is about to address in Birmingham, on inclusion and the value of direct payments that allow families to construct their own package of support.

It is quite some package in the case of the Clarkes, who now have six children plus assorted pets, overflowing their home in a Halifax sidestreet, even when Clarke is out directing the charity she runs, and her husband, Andy, is at work as a psychologist. Nadia has eight support workers and a pace of communicating, through signing and an electronic voicebox fitted to her pink and purple wheelchair, that demands time and patience.

Inputting her GCSE work involved hours for her helpers, as did scribing her answers. Simply answering a question about her feelings on first going to Savile Park primary school, which had its own difficulties at the time in terms of Sats and league tables, takes a couple of minutes; but it also introduces the “Nadia effect” which, her family and helpers have no doubt, makes inclusion of any child in this position rewarding for everyone.

“Nothing is simple,” says Katie, whose turbo-charged character has been inherited by all her children, larking about in photographs that wallpaper the loo and kitchen, which show Nadia embraced and beaming with the others. “It’s a rocky road at times, but it can be travelled.”

Back in Northumberland in 1998, where there was talk of some parents sending their children to private school if Nadia went to the village primary and gobbled up time and resources – as they saw it – the family dreamed of a school where their child could tackle the same life as everyone else, just as she did at home.

It took two years to find, starting when Nadia was only four. Katie and Andy sent every primary in the family’s part of Northumberland a letter, making no bones about their child’s complex needs but underlining the positive, rewarding side. None felt that they could cope, and the county council’s option was a 50-minute taxi ride to a special school. So moving entered the agenda.

Nadia’s brother Sean, a year older and currently in the US on a pre-college stint at Camp America, was up for it, and her small sisters Nicky and Reay were young enough to cope. But where to? “Middlesbrough was lovely about Nadia,” says Katie, but there were logistical problems with a house and jobs. Leeds said come, but we can’t assess Nadia until you’re here, which was a gamble too far.

“Then I discovered that Calderdale had signed the Salamanca agreement, committing to wholly inclusive schooling, along with Newham down in London,” says Katie. “I’ll never forget when Andy and I went to see Bob Hayfield, the head of special needs. He just said: ‘We need to find the best mainstream school for you so Nadia can go to the same school as her brothers and sisters. It was like hearing a symphony orchestra playing in your head.”

The key to Calderdale’s decision to resource children such as Nadia is recognising that everyone benefits from having a Nadia at the same table in the primary school, or at the secondary school’s next desk. When she turned 12, her family found exactly the same welcome from Ian Adam, the headteacher at Ryburn high school, who said: “We haven’t done this before and we’ll make mistakes, but we want it to work.”

The council held that attitude universally. Officers had looked at events in Spain that led to Unesco’s Salamanca initiative in 1994. They established two resource centres for deaf children at primaries, one at Savile Park, where the emphasis was on welcoming everyone.

Attitudes like that are the key, says Katie, rather than logistical challenges such as the Victorian stone stairs at the primary (since rebuilt), which joined the list of obstacles that Nadia had to overcome. “It isn’t just attitude, but the real sense that Nadia has people around her who share her, and our, very high expectations. People saying well done, keep on.”

Nadia chips in at this point, after getting new batteries fixed in her voicebox – running out of power just as we met was a typical small glitch. “I was excited about meeting new friends at Savile Park,” she says. Although her movements are restricted by the cerebral palsy, you can see the recall in her wide grin and expressive eyes.

“Now I’m off to college and then after that uni, I hope, maybe travel the world for a year, and then go on to my dream of working in healthcare.” Inputting that sentence takes a couple of minutes, and Nadia’s support worker Adele Kneen helps me with the robotic American voice’s struggles over “Savile” and “uni”. But as with celebrated fellow victims of paralysis such as Professor Stephen Hawking, you soon think: “So what? Tell me more.”

“It’s really good fun being with Nadia,” says Kneen, who is helping the transition to Calderdale college, where the pair have spent the morning inventing and overcoming possible problems on a risk assessment. Like most teenagers, Nadia goes into town with friends and they come back for sleepovers.

“Is it true that you have arguments with your sisters sometimes?” I ask. “I like my brothers,” she quips back through the voicebox, supplemented by the small movements which – a Herculean task – she has mastered to use as British Sign Language.

Nadia’s story, which certainly has many chapters to come, is now one of a series of similar case studies highlighted by the Alliance for Inclusive Education and Parents for Inclusion. They have plenty of possible conferences lined up, beyond the two that she is currently working on, feeding her speeches into the voicebox with Kneen, so that her argument will come out at a normal – if American robotic – pace.

There’s the fight to get disabled people equal access to training in the apprenticeships, skills, learning and children’s bill, now being considered by the House of Lords; the same campaigning over the equality bill, recently published, and demands that the government consult the disabled more widely before ratifying a new United Nations convention. “All hands to the pump,” says Simone Aspis, campaigns and policy co-ordinator for the alliance. Don’t doubt that Nadia will be there.

This post is part of the Inclusion Rules! debate at Same Difference.

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