Encounter with Mr C.

In Spain they say you are born as half an orange, a “media naranja”. Then you search the world, your town or your barrio for the other half of your orange. Only when you find your “media naranja” – the other person who will complete you, will you ever be really happy. I’m incredibly lucky. I found my media naranja.

He came from a lovely but impoverished rural community where people were not politically minded, if indeed they ever voted. Nor did they look outside the community for support in the hard times. He went to school with brothers and sisters whose parents were brother and sister and no one spoke about this to outsiders. People’s expectations were that they would be born, would work, get married, have children and die within mostly within their community.

He left school at 14. No children in his class were even entered for examinations as it was common knowledge that none would need them for the work they would do. He went straight into an apprenticeship with a local firm. He dated a local girl and got spectacularly drunk with his mates in the pub on Saturday nights.

But he wanted to see something of the world before he settled down so much to everyone’s astonishment he left his job, his mates and his village and went to London. From there he travelled around in Europe, getting to know people who spoke a different language, ate different food and for the first time in his life saw how wide and wonderful the world could really be.

But what the world had in store for him was not more travelling in foreign lands, but returning briefly to his friends in London and a chance meeting with a teenage mum in a pub. I was not what he was looking for, nor what he wanted in his life at that time, but I was his media naranja and he was mine and so it was. We were powerless in the hands of fate.

He is an open, friendly, funny and totally honest man, who offers you his hand to seal the deal. A hard worker who prides himself that every job he does meets his own high standards. Not a loud man, nor a confrontational man. He finds deliberate unkindness baffling and the world of manipulative, self- serving politicians is totally alien to him.

My father (who saw more than his fair share of heroics in his lifetime) once told me that few men act in a deliberately heroic manner at the point when it’s necessary, you simply do what seems to be the right thing to do in that moment- without much forethought. This is the story of how my MN went shopping in Sainsbury’s on a Friday evening last year, acted without forethought and was again, my hero.

He had just finished a small job in West Oxfordshire and was heading home when he thought he’d stop off in the small branch of Sainsbury’s in the little town there and pick up a few things for dinner that night. He had already filled his basket and was about to head to the check-out when rounding a corner into the next aisle he saw, half way up the aisle and accompanied by 2 burly security men, Mr David Cameron, also doing a little last minute food shopping in Sainsbury’s.

Now if you had asked me earlier what I expected him to do at this point I would have said to you without question that he would have turned away, come home and said to me “you’ll never guess who I saw in Sainsbury’s”. But on that day and in that place for some inexplicable reason, instead he walked straight up to Mr C and with sweating palmas and a voice cracking with emotion, said to him;

“Good evening Mr Cameron – you and I have something in common. We have both lost our beloved sons.

But we have something more than that in common too, both our sons were disabled. In fact you knew my son; you met him when you came to his school a couple of years ago for their 100 year anniversary party.

He was a lovely boy, a golden child, a special person who made everyone love him. We miss him more than I can say.

But I want to ask you is why, when you know what you do, why you didn’t try to save his school from closure when you knew it was the best school of its kind in the UK, a wonderful place, a flagship school?

Why don’t you care about what happens to children like my son – why aren’t you doing more for us? Don’t you know how we struggle every day and what we have to deal with?

Not many of us are like you, most of us aren’t rich. Most of us need help – and where are we going to turn to for that help? You’ve cut all the budgets for everyone and these cuts are literally putting our children’s lives in danger. It’s too late for my son now; your cuts have already killed him.

What I want to know is this – how many more disabled children are going to die in this country so that you and your party can tell everyone you’ve saved money?

How many more families are going to be left like us, in grief and having to fight through the system just to get heard. We haven’t even had our inquest yet and god knows when we’ll have it.

It’s not good enough Mr Cameron.

It’s just not good enough and I want to tell you this – the people of this country, the good people of this country, are watching you and watching what you do and who you do it to. There will be a reckoning and there’ll be a time you’ll have to answer for what you’ve done.”

At the beginning of the encounter Mr C was pinkly plastic, pleasant with a slight smile. By the second sentence the smile was disappearing. At the third sentence his eyes started to fill. At the fourth sentence he started to mutter something about doing the best he could, but the sentence was largely unformed and the smile had left his face entirely. By the sixth sentence he was glancing about uneasily, looking to see how close his bodyguards were to him and indeed they started moving in closer at this point. He looked desperate for a spin doctor to come around the corner to his aid and very much in need of a good speech writer.   The pale and sweaty faced man was he left standing there looked a very different man to the one who had offered an unshaken hand to my partner at the beginning.

“Goodbye Mr Cameron. I have a feeling that you’ll remember me” he said, turned and walked away. As if in a daze he put down his basket of food at the till, left it all there and walked out to the car park empty handed.

He came home and told me everything. Within minutes of telling me he started to shake all over and he literally shook for an hour in a kind of delayed shock. He was traumatized, but I was never prouder of him.

Although this only happened last year I haven’t thought of it very often and had no particular plan to write about it. But right now there are Justice for Nico flyers and Justice for LB being handed out at the Labour Party conference by the courageous and passionate Kaliya Franklin and her team from the disability charity People First England and when they have finished there, they’ll continue on to do the same at the Conservative conference.

Nico would be so happy and so proud to see those flyers at the conferences. To be honest not because he wanted to tell the politicians what they should be doing for people like him and how terribly badly they are letting them down right now.

No, if I’m honest Nico would have liked to see all his flyers there so that he knew everyone would be talking about his favourite subject – him. Admiring his beautiful eyes, he would have made sure he charmed the room as he flirted with the pretty girls and made sure everyone there noticed him.Nico's Photos_0052

So perhaps after all, our son Nico was a born politician!

How long is too long?

Last Tuesday I worked all day and most of the evening on a statement for the Oxfordshire Family Support Network who were meeting with NHS England that week to discuss how NHS Trust providers, including Southern Health, had treated the families of children who died in their care.

It was a hard statement to write, very hard. But I pressed on because I wanted someone to hear our story very badly. After some tears and a lot of typing it was finished and I emailed it in. Sadly I had to include a warning that we were “under due legal process”, which meant that our statement would have to be anonymous.

Whether this was why my statement wasn’t used at the meeting, I don’t know. But I think it more likely that those parents who were present gave such vivid and compelling testimony that the meeting probably over-ran anyway. There are so many stories like mine and all of them deserve to be heard and heard again. I do not have the monopoly on sorrow.

But to have put so much into this statement and once again not to have been heard has triggered something inside me and in the last few days I’ve been thinking about how it has affected me to lose the ability to speak freely about our story, how much that has affected the support I’ve had and how this makes me feel.

Initially the first day of Nico’s inquest was scheduled for June 2013, but after receiving our statement the coroner decided to postpone the inquest until October 2013, so that he had more time to consider the facts. But on that first day there were so many witnesses and so much evidence that it could not fit into one day. So the coroner decided to adjourn the inquest for more statements and then continue in early 2014. As not all the statements he asked for were received (and I am choosing my words with great care) until early summer 2014, the coroner was not able to arrange for the second and third days of the inquest to take place until December this year. Three months from now.

One of the adverse effects which the drawn out inquest procedure has caused us is to make it impossible for me to make public exactly what happened, including details of Nico’s care, his death, the immediate aftermath and everything that has happened since which involves the inquest participants. Prior to the first date of the inquest I could have talked publicly and also to the press, but once the first day of the inquest had taken place we were then “in due legal process” which mean that from then on I have to be very careful about what I say and write so I cannot be accused of trying to influence the outcome of the inquest. That is simply something which I cannot risk at this stage.

But not being able to tell Nico’s story is increasingly like having my mouth taped up. Every day I read terrible stories on social media, in the press and on the news and I want to say “Yes! Me too” but I can’t. Sometimes I want to say “If you think that’s bad you should hear our story!”……but I can’t. It’s very hard.

You may be wondering at this point why I wasn’t a gushing stream of anger, finger waving and general truth telling in the gap between losing Nico and the first day of the inquest. The simple answer is that at that point I just wasn’t able to. Crushed by tearing grief, reeling from dealing with bewildering legal procedures I didn’t understand, trying to find my way through this awful maze without support or guidance, dealing with depression and trying to simply find a way to get from one day to another. Campaigning on top of that? That just wasn’t going to happen.

So I’m not able to write here what I want to. I’m not able to share with you the things I’d really like to say. So instead I’ll tell you a story. Let’s call it an analogy.

Once upon a time there was a young man who went to a really wonderful school, a beacon of excellence in the world of profound disability. One of the wonderful things that this wonderful school did for him was that they gave him a voice. So few of his throat and mouth muscles could be controlled by him that he just wasn’t able to turn the sounds he made into real words. This frustrated him terribly. He couldn’t tell people what he wanted, when and why and this made him so very sad.

But the school could see that if they worked hard with the young man (who was just a very little boy then) that they could help him to find a way of telling people everything that was in his head and just bursting to come out. So over the years (yes, it took years, not months) they worked with him tirelessly, trying out lots of different ways for him to be able to communicate. Because he wanted so very badly to have a voice the young man (then still a boy) didn’t care how hard the process was, or how long it took – because he loved finding a voice for the first time in his life. Eventually he learnt how to sign for “yes” and for “no” and also for “I don’t know”- which was a massive breakthrough as it meant for the first time he could answer questions and make his own clear choices. He also learnt how to use a “communication book”, where the teachers and care staff could use the symbols from his book to offer him choices around a theme (what type of drink do you want? Would you like to go out? Would you like to watch a film?). He could tell them his decision and then using more symbol cards in the book, make even more choices – until he had decided exactly what he wanted – and told them what it was.

His parents learnt the communication system too so that the young man (by then) could continue to let everyone know what he wanted at home. Happy young man who was able to tell everyone what he did and didn’t want! Smiling young man who made his own choices in life and told the world what they were!

But then the local authority decided that in order to save money Social Services would tell the young man’s parents he had to leave the wonderful school (by then he lived in the young adult unit) and go to live somewhere cheap.   Social Services said the young man was incapable of making decisions about where he wanted to live. They sent him away to a shared house where the care staff were too few and too busy to use his communication book. The staff were too few and too busy to ask the young man what he wanted. They were too few and too busy to watch or listen to his replies or his requests. His communication book lived on a shelf in his room, thick with dust and unused. The young man grew very sad indeed. So sad that he finally asked his parents a very big question – “Can I leave here? Can I live somewhere else please?” But by then he had forgotten how to use his special book or make his signs for yes and no.

It was only when his parents saw deep in his eyes his terrible anguish, his longing to have a voice, to be listened to again and his awful silent isolation that they knew what they had to do. And so they asked the care staff “please can he come home until we find him another place to live?”

But the people with the power, the trust in charge of the care in the home, the local authority and social services didn’t want to listen to the parents. They didn’t think their voices were very important either.

So this is my question. How long is too long?

How long must you wait to be heard? Why are the people who most need to listen to you afraid to let you have a voice?   How much more time must pass before we will be free to tell our story for everyone to hear?Nico's Photos_0051

The day after 11 December. It’s not too long now to wait – is it?