Nicholas (nwhyte) wrote,

18th Birthday

B turned 18 on Friday. Her brother F and I took her on an outing yesterday, starting with tea at the home where she lives, and then a visit to a scientific outdoor site with fossilised trees, finishing at the cafe in the gardens of Hoegaarden (where the beer comes from) where B demolished a plate of cheese blocks, insisting that I dip each one in mustard for her. She clearly loved going to a couple of new places with me and F, and looked around with joyful inquiry at her surroundings. F took this picture at the site with the fossilised trees, which I think captures her slightly quizzical relationship with the world and with us.

B seems very happy where she lives, in a protected apartment with half a dozen other kids, most of whom are at least as disabled as she is. She is always glad to see us when we visit, but never seems too sorry to see us go. She has got over a phase of not really co-operating when we took her out for walks, throwing herself on the ground and refusing to move until a wheelchair was provided (she can walk perfectly well); she doesn't do that so much these days, and I have to say that she was pretty well-behaved in the cafe, casting covetous looks at other customers' orders but resisting the temptation to help herself from neighbouring tables before we were served. I still prefer to have F with me if we are doing any particularly adventurous outing as we did yesterday. (F will turn 16 next month and is now taller than his older sister and his mother, if not yet quite as tall as me.)

Now that B is 18, we have been appointed her legal guardians. This required a court hearing back in February, to which she was brought in person so that the judge could see the situation for himself. (B smiled at us and immediately ate all the biscuits in the room where the hearing was taking place. She was then removed by her carers.) The process in Belgium has recently been changed; until recently people in her situation were ruled to be in a state of "prolonged minority", with the parents or other family members therefore continuing to take responsibility as if she were still a child. The new law is a much more flexible instrument that can apply guardianship to varying degrees for people with physical as well as mental disabilities, and also allows for it to be withdrawn fairly easily if needs change, putting the disabled person herself rather than her family circumstances at the centre of decision-making. This was as a result of guidance from the European Court of Human Rights and the UN Committee on the Rights of Persons with Disabilities, and I think it's a humane reform, if a little irrelevant for us (B's needs are unlikely to change, and her condition will not improve). It's still a bit untested; the judge commented that we were the first couple who had applied for joint guardianship in his jurisdiction under the new law. B now also has a vote, which is compulsory in Belgium, though I believe that there is a system in place to get medical exemptions at each election for her and her fellow residents.

Parenthood, eh? You never quite know what you are going to get.

As for the fossilised trees - quite a jewel of a small nature exhibit, stuck in an obscure lane beside the motorway, which I will go back to when I don't have someone with me who requires constant supervision (and perhaps when I do have someone with me who is more interested in the subject). It's extraordinary to look at these trunks, knock on the solid stone that they have become, and consider the 55 million years since they grew in the primeval swamp. We are all temporary phenomena on the surface of the planet, choosing our milestones as best we can.

Tags: life: autism, world: belgium

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