The humble truth of living with disability

The humble truth of living with disability

Shirley, Ian, Nathan and Colin are a family in Edinburgh. Shirley is the director of a charity there called Snip that provides advice and information on services available to children with special needs and to their carers. She is also the chair of the Family Fund. Ian is a manager in a photocopier company. Nathan, 21, is the elder of their two sons. He is an actor, writer and composer, and has just performed in his first professional role. The other son, Colin, is studying politics and social policy at Loughborough University. They are two good-looking guys and part of a family that appears to laugh a lot.

Here's what makes them different. Nathan has a combination of very severe arthritis and a specific learning difficulty, which means that he has no visual memory, or sequencing. Colin was born two years later. At birth, he suffered some kind of asphyxiation and as a result has severe cerebral palsy. He is exceptionally clever and can use a mobile phone, a PlayStation and the TV remote, but can't feed himself. Oh, yes, and one other thing turned their lives upside down two years ago: Jane announced that she was a man. Who's Jane? She was Ian and Shirley's daughter who underwent gender reassignment and became their son, Nathan.

Shirley is a pretty straightforward woman, so you can ask her whether she and Ian feel culpable for their sons' conditions. Her answer is, unusually, that they never found out. When I ask her why Colin survived, she says: "You know, I've never asked." Although on the face of it that seems odd, the more you talk to her the more you realise it's part of her treating her sons as ordinary. She's not burying herself in a haze of naivety - it's just that some children are born with impairments. It's a fact of life. Since 1975 there has been a 62% increase in the number of disabled children and young people under 16.

Part of this is that there are diagnoses now for things that were previously ignored. As the comedian and actor Victoria Wood once said: "We didn't have dyslexia in our day. They just sat at the back and did raffia." But the real increase comes from the fact that a baby like Colin would not have survived.

None of the baby books talk about that. "We've sanitised birth," says Shirley. Later, without bitterness, she adds: "I didn't get any cards, until I rang people up and asked them to send them. I think if he'd died everyone would have pretended he'd never been born." Because he was supposed to be going to die, no one would celebrate. But he was still her son, no matter how short his life was going to be.

For years, Ian found it difficult. He absented himself. A father's job is to fix things for their kids, but he couldn't fix it for his boys. And professionals and Shirley and all the women in her support group colluded with it. The other mothers just clicked their teeth and went "bloody men" when their husbands didn't help. Professionals made appointments, and if Ian couldn't be there, they just went ahead with Shirley. At one point she ended up doing family therapy with just her and the boys. She says: "No one really understood how deeply hurt Ian and other fathers are."

There is some help available, although not nearly enough. But one thing that drives Colin up the wall is that, despite the fact that his CP is a condition that will never change, he's constantly being assessed: for the blue badge scheme, disability living allowance, incapacity benefit, independent living fund, social work community care scheme, direct payments, disabled students' allowance. He says he is going to start a personal website and anyone who needs to assess him can just log on and get the info themselves. You wonder why assessments don't carry across.

Without indulging in the nonsense of saying her sons are just "differently-abled" or whatever, Shirley recognises that Colin and Nathan have severe living problems, yet she talks about them as - and it's a fraught word - "normal". She says: "I hurt for them that they have to be dependent on other people. It's not what I thought would be my life as a parent. But what they are doing is, like anyone else, growing up and living a life. I am humbled by them, really."

· Simon Fanshawe is a writer and broadcaster