I’ve been a trustee of the small charity Sibs for ten years. It supports brothers and sisters of disabled children and adults. (The third sector defines ‘disabled’ as both physical and mental, and the word also applies to people with a serious long-term condition.)
My only sibling, Mathew, sixteen months my junior, is seriously brain-damaged (that’s his official diagnosis – he doesn’t fit into a category) with acute behavioural issues. In many ways, looking back at my childhood, I would describe myself as the sister of an only child. The first volume of the autobiography I’ll never write would be called, It’s All Right For You, as that was the mantra that echoed down the years.
I would have loved to have access to a service like Sibs – knowing I was not alone and so on.
The part of Sibs aimed at adults deals mostly with issues of care when parents become too frail to look after a disabled offspring living at home. Sibs has advised, assisted and supported many people in this regard.
The children’s section of the charity offers tips, quotes from other siblings that might help, and a (obviously closely moderated) forum where kids can chat. youngsibs.org.uk is an online support and information service for young people aged 7-17. Here’s what one eleven-year-old said. ‘Using the Young Sibs tips really helped me to cope. Although it was hard at first, trying out new ideas showed me that things can change for the better.’
I feel passionately about this neglected corner of social care and support. Check it out: sibs.org.uk. And spread the word.
There are over half a million siblings of disabled children and young people in the UK. 5.1% of children under 16 are siblings of disabled children.
AND Here’s a programme I made in lockdown for Radio 4 on the learning-disabled – it’s called Perpetual Lockdown. You can hear it on i-player. It might help.