Dream killed by red-tape monster
Lucy Ritchie finds it hard to describe just how excited she was to be going to university in 2007. It was, she says, her hope for a fresh start, a social life and independence.
"I was also delighted at the idea of my dad getting a fresh start," says Lucy, who lives in Linlithgow. "I had always been amazed at the way he had seemed happy to let his life revolve around me - he was my full-time carer for 11 years."
Lucy started 18 months ago on a B.Ed course at Dundee University, in the hope of becoming a primary teacher. What she had not envisaged, however, was the organisational nightmare ahead, which would test her both physically and mentally. She has written an account of her experiences, The Paper Hydra: A Transition Quest, in the hope it will make service providers look up from the "meaningless noise" on their desks and "remember why they wanted their jobs".
Lucy, who has cerebral palsy, is dependent on a wheelchair to get around. "All of my limbs are affected. My legs are worse than my arms. They don't do much at all. I can work well with both arms - it's just things that need hand strength I'm terrible with."
So when, on the day she was due to go to university, her electric chair stopped working, it was "not good". She made it to her student accommodation and met her flatmates. However, the carers Lucy depended upon to get her into bed in the evening failed to turn up.
"We had no choice but to lug the essential things back to the car and go home again."
When the care plan did kick in, it meant that Lucy, at the age of 19, had to be in bed by 10.30pm, just as everyone else was heading to the student union.
One positive aspect of university was the lectures. However, no scribe had been lined up - Lucy can write, but very slowly - and as her disabled student allowance had been delayed, she did not have a laptop.
The straw that broke the camel's back was the mattress on her bed. "X-rays of my spine look like something out of Bionic Woman. As I'm sure you can imagine, a back with that much titanium in it reacts painfully to a hard mattress. This one was concrete-hard."
Each problem required a series of phone calls, relevant people to be tracked down, forms to be filled, all on top of six- or seven-hour lecture days "stretching (her) brain to where it had never gone before".
In the end, Lucy was without her electric wheelchair for four days because of red tape - it took five minutes to fix. Her father had to secure a mattress from a hospital because the wait for the equipment store became too much.
Lucy describes the system for processing care needs as "some arcane and mystifying machine". There is too much paper, too much guidance and too much likelihood that the person at the centre of it all gets buried, she says. Eventually, Lucy found a Dundee social worker who "had an admirably independent attitude to her job".
"I began to think things might just turn out OK after all," she says.
They didn't. After three months at university, with the threat of having to move to a new flat hanging over her because fire regulations had been overlooked, Lucy dropped out.
In part she blames herself, regretting she didn't do more to prepare. She also admits she had unrealistic expectations of her ability to cope. She had envisaged not needing help at meal times because she thought she and her flatmates would cook and eat together; she now knows that was naive.
When she asked for additional help, from the time lectures finished until bedtime, her request was refused.
"I'm often told my expectation of what is possible is unrealistic, but is that true? Is it right that an accident of birth or chance should mean that our lives are ruled by a paper Hydra with its neck in knots? Should we just be grateful for what it gives us, and give up on things like spontaneity, control and going to bed when we damn well feel like it?"
Lucy, now 20, has decided that teaching is too physical a profession for her. She starts a course at West Lothian College this year which she hopes will lead to a career as a play specialist, working in children's hospitals.
She doesn't regret going to university, she says, and has learnt from it. Now she hopes officialdom will too.
Lucy Ritchie, The Paper Hydra: A Transition Quest, is available from charity, The Playback Trust
The Paper Hydra is a "must read" for policy-makers, practitioners and parents, according to Scotland's former Commissioner for Children and Young People.
Kathleen Marshall acknowledges it is a "very personal account" but says it "poignantly demonstrates how our failure to provide appropriate support leaves our society bereft of the rich contributions young people like Lucy can gift to us".
Tom Hamilton of the General Teaching Council of Scotland has been researching how well disabled students are supported during teacher training and will be publishing advice for universities later this year. He has heard positive stories and horror stories, he says: "We want to encourage more people to apply and become teachers, but it won't happen overnight."