Alexander Dragonetti
Former British Diplomat
My younger brother James changed how I saw the world. You noticed it first in the small things. Olive oil was never next to the cooker but hidden behind 15 other bottles in an unknown cupboard. Supper might be rice topped with Petit Filous, or pasta with a chocolate mousse sauce. A cup of tea wasn’t offered so much as announced – an information notice that one would shortly appear. Gradually, you internalised the logic. A fallen Lego tower required an immediate response. Doors to the outside world were opened slowly, and shut quickly, to keep out the danger of flies. James had a learning disability – global developmental delay – and autism. He didn’t speak until he was seven, and never really learned to dress for the weather.
My family instinctively understood that we had to create a theatre set – a place where the world was kind and safe. The world isn’t easy for most children; it’s harder still for those with a disability. So we did whatever it took to hold up the walls. Most of the credit for that belongs to my parents. They kept that set standing day after day, even as the outside world threatened to enter it. Caring wasn’t a one-way street. James looked after us too. I never had a chance to sit down without being covered in a blanket. When he came to visit me at university, he wouldn’t dream of taking my bed – which meant we’d both end up on the floor. When I left for university, I’d arrive at the station only to realise my phone was still three miles away at home – plugged in and fully charged, having been carefully removed from my bag beforehand so it wouldn’t run out of battery. Some of the happiest times we shared were at Mencap summer camps. This was a residential week for children and young people with a learning disability, where the children were the stars. Days were packed – arts and crafts, sports, trips out – all with staff and volunteers who understood the children properly. It meant they could make friends, try things for themselves, and feel safe doing it. 1-1 helpers were around day and night to ensure they were safe.
