In the last couple of weeks people have done very important and worthy things. They’ve been writing to MPs. They’ve been speaking at and reporting on important conferences. They’ve attended the next part of their legal challenge. The hard core disability activists and justice fighters have been doing things that really matter.
While I’ve been on a beach in Antigua.
The most disability active thing I did was write my son’s name in the sand and then photograph it off-centre and badly. Other people do the graft that matters while I’m snorkelling in the Caribbean.
This is not a pity plea. Quite a few people on Twitter said I deserved a break, though I’m pretty sure they were thinking of Cornwall rather than Antigua. Frankly I think this just reinforces the fact that I’m really not part of the disability action movement. I’m a disability justice groupie.
I spent a wonderful week in wonderful Antigua with my wonderful daughter in a sea so unbelievably turquoise that even I thought it must be a fiction. I thought about Nico exactly the same amount of times each day as I do at home and so did she. Our thoughts of him are constant. But in that white sand and turquoise water week we never actually spoke about Nico except once.
Ironically we were in the sea, treading water. I started talking about how much I know I’ve changed in the last two years. I talked about what I’ve done, who I’ve met and how what I’ve accomplished has made me feel about myself and the world around me. Then she told me her story.
She told me how left out she feels from my “new world”. She talked about how I throw out people’s names as if she ought to know who they are, but she doesn’t. I tell stories about meetings with these people and things they’ve said and written. But she doesn’t know them. She talked about my new habit of talking in acronyms; how everything now seems to have an acronym, or as she put it “talking in letters”. She told me about how that makes her feel. How it makes her feel a bit stupid, ignorant and left out – as if she ought to know and because she doesn’t, she feels as if she’s not really part of the fight for justice for Nico’s any more.
She asked me to be more sensitive and to think about this. She reminded me that not everyone lives in a world of acronyms; it isn’t normal to everyone and that sometimes using them a lot only makes people outside that world feel alienated. She asked me to remember to include her more in everything that happens as we go forward into the Investigation.
I listened to her in silence and offered no justification or argument because she’s right. The reason that I know she’s right is because I’ve been in the place she is now and frankly, I should know better.
When I first started the “Justice for Nico” campaign on Twitter I soon noticed that everyone who came forward to support me used acronyms in all their tweets. I didn’t understand any of them and I had to constantly ask what these letters meant. I think the low point for me was when I asked what “L.A.” meant and was told “Local Authority”. That made me embarrassed by my own obvious silliness – I mean, who on earth hasn’t heard of a Local Authority?
I kept tweeting to explain that I was new to this world and unfamiliar with acronyms, but the more it happened (and it happened every day), the more silly, small and ignorant I felt. All the chips that had ever been on my shoulder about leaving school young and having no qualifications came back with a vengeance. This, on top of the grief I was going through. made me feel as if I wasn’t capable of taking on Southern Health, and that I had no place in this new world of properly organised, educated and experienced, grown up, justice fighters.
And now it seemed that in my eagerness to fit in, to embrace my new role, I had fallen into the very same trap. In flashing around my new friends and my new list of acronyms I had made my own precious daughter feel left out of her own brother’s campaign. I had let my ego rule my own natural kindness.
In a world of watery, transparent greens and blues I had to face my own shortcomings and acknowledge my own lack of transparency. For if I can’t do better than others, how can I call myself a justice fighter?
Thank you my dearest daughter. I.W.D.B. (I will do better).