It’s leaflets at the moment. If my son sees any, in a cafe for instance, he wants them all. Later he will want to go through them and then destroy each one, tearing them into tiny pieces. We’ve got him down to a maximum of three. This is progress. When he lived at home, it was books – each one to be looked through swiftly, then reshelved on the other side of the room. If we went outside, every item on display in the two village shops had to be named three times. I stopped going outside. I stopped trying to speak to anyone on the phone, because my son knew that if he stood next to me and shrieked like an agonised seagull no one could hear a thing.
I have spent a large part of my life as a carer for my son, whom I shall call Huw (he is now a vulnerable adult) who has severe autism and obsessive compulsive disorder (OCD). I was helped for part of that time by my daughter, Rhiannon. There are around 7 million carers in the UK – that’s one in 10 people – and that doesn’t include parents whose children aren’t sick or disabled. So many carers’ stories go untold. Why? Probably because it’s exhausting, especially if lack of sleep is part of the picture (typical in cases of autism). It may be because unaffected people feel uncomfortable thinking about it, but it’s possible that they just don’t think about it, full stop – because our stories aren’t out there. And yet it’s possible we will all be carers at some point.
Many people will find, at some stage in their life, that they will need to assume responsibility for someone who cannot care for themselves. Caring is a vital part of our society, and for most people it cannot be outsourced to an expensive nursing home or private staff.
Yet caring remains undervalued. A catchphrase from the Thatcher era, seeking to justify the destruction of many social support systems, was that “spoon-feeding only teaches the shape of the spoon”. This ignores the fact that people from babyhood to frail old age often do actually need to be spoon-fed. By insisting that society did not exist, the Tories set in motion a pretence that such needs do not exist, and the people who cater for them were not worthy of recognition, beyond some vague adulation of “family values”.
Caring can either break you or make you a stronger, wiser person. Many people, most of them women, can be broken by the burdens they have had to take on, now that society has largely turned its back on their needs as support systems for sick and disabled people and their families have been further dismantled.