Mother's little helper: To grow up caring for a disabled parent can be a joy

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Indy Lifestyle Online

My aunt had said it many times before, so I'm not sure what made me take it to heart this time. Rita was staying with us in the summer, amid the domestic chaos caused by two small children, two careers and one dog. "I never thought you'd end up like this, son," she reflected one evening. "Like what?" I asked. "You know, normal. You had such a peculiar childhood. When the other lads were kicking a football around, you were hurrying home to shut the curtains for your mother and pull up her pants."

Put like that, it does sound very peculiar indeed, but it's never been the way I remember it. Or hadn't until then. Rita was as close an observer of my childhood as you could get without actually having been there. She was my mother's favourite sister. Since Mum's death in 1998, Rita has been a wonderful stand-in mother/grandmother. What she was getting at was my role as what would now be deemed a "child-carer".

My mother was diagnosed in 1959 with MS. The consultant told her she'd be lucky to live a few more years. Her response was to give birth to me in 1961. She was already 40 and my brother and sister were nearly teens. If she could have a baby, she reasoned, she could prove to herself she was essentially healthy. I was her gesture of defiance.

She was only half-right. She well outlasted the gloomy prognosis, living for another 38 years, but most of them were spent in a wheelchair. The landmarks by which we remember childhood usually consist of new bikes, holidays, changing schools. I can measure mine by the stages in my mother's doomed battle to keep walking. Until I was seven, there was one stick, latterly augmented with her hand on my shoulder. For the next couple of years she staggered on two sticks, then resigned herself briefly to a Zimmer frame until, when I was 10, she took a tumble that left her forever more a wheelchair user.

So, yes, my childhood was different. When I was at secondary school, I would, as Rita recalled, hurry home at the end of the day. As my mother found transferring on and off the toilet from her wheelchair hard because of her weakening arms, I would often arrive in time to help her pull up her trousers and sometimes more. There were the times when she had fallen and lain there for hours waiting for me to get home to haul her up off the floor.

Her gift was to make such crises seem as nothing, normal, but at some stage I must have become conscious of having responsibilities. When she was going through a particularly bad patch, I kept being late for school. If you were late, you got detention. I went to see my form teacher and explained that I couldn't stay for detention because I was needed at home. It was the first time I had raised my mother's disability. I was let off detention.

Today, I suspect I would also have been referred to social services, the prevailing view being that children of disabled parents are disadvantaged and more likely to be at risk. Yet it all comes down to what you consider a "normal" childhood.

Certainly mine was different, but was it worse? In many ways it was blessed. There were, for example, our faintly bizarre trips in her Invacar, the chariot-like three-wheelers issued to disabled people by the government in the 1960s. There was only one problem: it was forbidden to carry passengers. I would curl up on the floor with a cushion under my head and we would drive to the school gates, to Mass, and on one occasion to the seaside. If she spotted a policeman I'd put the cushion over my head and hide. And once we'd passed him, we'd just laugh. She laughed more in that car than anywhere else.

I don't remember ever meeting other children in the same situation. Certainly, plenty exist today: 170,000 according to the Princess Royal Trust for Carers.

Some charities are calling for an inquiry into the damage being done to young lives. My reaction is to say "not so fast". There may be losses but there are also gains. The most obvious, enduring one in my life is that I am now chairman of a disability organisation. Aspire works with people with spinal-cord injuries, so the link is not direct, but many of them have children of their own. And the raised eyebrows of sceptical social workers that so often meet them may be entirely out of place.

Peter Stanford is a writer and broadcaster. Aspire can be contacted at www.aspire.org.uk

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