Guilt and Acronyms

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).

2015-06-19 07.31.08

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9 thoughts on “Guilt and Acronyms

  1. Don’t beat yourself up, your daughter may have felt left out, but what an amazing relationship you both have that instead of internalising that and letting it come between you she was able to articulate it to you directly. That only happens when you have put down strong foundations and trust each other. It is always good to have someone close who keeps our feet on the ground. Xxxx

  2. We do. Like everyone we’ve had our ups and downs but it’s OK to acknowledge when you’ve not done well and can do better. So often when someone criticises us we just put the defence barriers and try to blame them instead. I’m now at the stage where I can say “I didn’t realise that. I didn’t see it from your point of view. I’m going to try to do better”. A tragic death robs the WHOLE family of the person they love. X

  3. You are right of course, a tragic or indeed worse- “preventable death” must rip you apart because things could have been done so differently. How do you ever stop going over the reasons/details/what if`s. It must consume you completely. But even more so when you are dealing with the people behind the death, and their never ending need to discredit/ destroy you by the ignorant “system” they work by. It would be easy to forget the very people who have always shared your life up until that point without meaning to. It is a constant daily struggle of red tape and cold bureaucracy without pause, whether you want it or not. You must just exist to answer letters, emails, phone calls and meetings all without choice. It must become easy to forget who you are, or indeed who you were before the nightmare. Shutting people out who you love isn’t done on purpose, and it happens without you meaning to. At least your daughter had the courage to voice her feelings in the end, so your special time with her was worth it, and you will both be closer for that honesty now. xx

  4. I agree completely with you Deb. I once said to someone that when you become a mum you are handed a job description which begins with the line
    1. you will fell guilty about everything and worry about your child forever.
    I still think that’s true and I think it will resonate with a lot of mums out there, whether or not your child is disabled. We all try with all our might not to let our children down, but when you’re someone like me and you lose a child in such circumstances, then the guilt is more enormous than I have words with which to describe it. Then you find yourself neglecting the needs of your other children in the fight………….but my plan is to do better and that began on the holiday. My daughter has been bereaved and greatly saddened and needs a huge amount of love, support and help from those closest to her to get through this and continue on to have a good life.

  5. Antigua, just beautiful . How lovely that you have posted about your early days using social media. I am good for email and then … oh dear. A decade in the wilderness and I really haven’t much of a clue emerging into the light. Willing you on ( Sara too ) I have just tuned into BBC 2, I so much want to see Connors flag. My husband has lost patience with me scouring the crowd whilst Lionel Richie belts out three times a lady , ” how old are those fucking people ” ended my quest. I actually posted on the LB Bill site that the map didn’t look very green ( the shame ) I imagined a Mr Snow style swing-o-meter updating by the hour I think ! Love your honesty , wish it were universal.

  6. Hiya Nic. I think this is the first time we’ve had a chat – but if I’m wrong please tell me. Watching Glastonbury is one of those things which in my head I now call “Nico torture”. He was so passionate about Glastonbury and all music festivals. We had to watch every minute and we never could save enough money to go. So we never actually went and now I know I never will. I too scoured the audience for Connor’s banner. I saw it there last year, but not this year but maybe that’s just because I didn’t watch enough footage. I’ve learnt many things from the past couple of years and one of them is the enormous importance of honesty. As I say in this blog “If I can’t do better……” I don’t think it matters that you don’t blog because actually people like you (and all the others here too of course) who regularly post comments on blogs are the life-blood of bloggers. If it wasn’t for people like you we’d feel as if we were just shouting into the wind. YOU let us know that actually people out there are reading what we write and this helps us so much when we next sit down at some dim, dark hour to write another blog. Thank you. X

  7. Pingback: From the mouth of babes | Justice for Nico

  8. Hi, no we never ‘spoke’ . I am thinking good things about the compassionate care award by the way. Unfortunately you will never be shouting into the wind, it is truly astounding how many families continue to need to fight for justice. I find your blog comfortable to read and I imagine lots of other people do too. Feeling comfortable and at ease is no bad thing. Please promise never to incorporate knob rot into a post, ( Dr Sara Ryan ) I bet she was a bundle of fun as a teenager ! I have recently come to the end of my justice journey for my youngest daughter who died in April 2013 . I am working at chipping away at inadequate palliative care for disabled people with communication difficulties and opposing the exclusion of disabled people occurring via poor build spec in new developments. A good friend advocates for adult sons living at home who have been thrown into the chaos of the ILF closure/transition to LA. We spoke yesterday and she is going to be tender meat for the buggers at our LA. So if you are ever writing in the dark you can be sure there is a need for you to do so for all our sons and daughters.

  9. Nic – you have just made me laugh. I promise never to include anything in blogs about rotting knobs! When I decided to start writing this blog I knew from the outset what I didn’t want it to be like, even though I didn’t know at the beginning what I DID want it to be like. It’s just sort of developed and grown in it’s own way. But I decided at the outset not to do any swearing because I know some people find that off-putting and I already have a blog title that’ll put some people off and the subject matter too will put some people off – so the last thing I want to do is to put off any others. I’m really so very sorry to hear about your daughter and actually poor/wrong palliative care is something that I feel very strongly about. Not because I’ve had the same experience but because I hear this just much too much from so many parents. It’s so hard now for all of us, whether our children are still with us or not. I know now that even when I reach the end of the line on my justice train, I’m still going to be working for a better life and a better world for ALL the Nico’s of this world, even the ones I’ll never meet. It just somehow seems like a natural progression. Please do keep reading and I promise to keep writing and I do hope so very much to be able to write soon about our justice train rolling into some good and hopefully places.

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