How many times can I return to this? [Er, clearly endlessly…] But this is hugely important. Yesterday we received a DVD with over 368 pages of notes about LB’s healthcare from the hospital. 368? It wasn’t like he needed a lot of hospital care. He was in rude health. Had a spate of assessment experiences as a tot (see polaroids on previous post) and then pretty much coasted until epilepsy kicked in around the age of 16.  Still, the hospital held this book-length set of papers about him.

Last night I went through them. I was struck by two things. First, the level of surveillance these demonstrated.  I had no idea that even the faceless assistants in those week long assessments were recording my every move and interaction with LB, the other parents and the world. Blimey. I was seen to be ‘sociable with other parents and staff’. Thank fuck for that. I thought we were all just hanging out. Negotiating tricky paths in a space of uncertainty.

(When I think of the layers of ethics involved in any research project compared to this type of gig? In the former, ethics committees act as a straitjacket inhibiting any unauthorised move on the part of the researcher. In the latter, family life as open season for any ‘professional’ to dive in, comment on and pick over.)

The second thing was what this surveillance showed about my relationship with LB. In the countless waste of bloody time assessments, I was the central person that professionals referred to, drew conclusions from and commented on. Consistent throughout the notes are comments like “LB frequently went to his mother for cuddles or with a toy. He gave good eye contact and lots of smiles”. Sob.

I ain’t flagging this up to say that LB and I had an extraordinary relationship. On the contrary, we had a relationship typical of many/most mothers and children.  But, when you have a disabled child, this relationship becomes public property. The subject of judgement. And when your dude turns 18, you’re transformed from being a central figure of love and care, to being a problem. That is very, very damaging. For everyone.

This afternoon I’m giving my first ever (and probably only) presentation about being LB’s mum at a women’s literature conference in London. I’d agreed to do it before he died. I wasn’t sure I’d be able to stand up and talk about him, so I made this film about the spaces of mothering. I’m now thinking it will have to be a work in progress as I need to add ‘Official spaces’.