Week 15: The Tale of Laughing Boy #107days

So we’re here again, the end of #107days for the second time. It is hard to believe it’s now two years since LB died. There really aren’t any words. Today we’re pleased to be able to share The Tale of Laughing Boy with you.

Produced by the brilliant My Life My Choice and Oxford Digital Media, with funding from Oxford City Council, grab a cuppa and sit back to watch.

Thanks to each and every one of you who have supported #JusticeforLB these past two years and both #107days campaigns. As Sara says of the campaign in the film:

‘These people haven’t met Connor, they don’t know Connor and yet they recognise the injustice of what’s happened, they recognise what a quirky and colourful individual he was and they’re acting, and they’re prepared to say this is wrong and join in. I think that’s absolutely amazing, it’s been so heart warming and so reassuring that so many people have stepped up and done all these different things and got in touch, and are really moved by it all. They just get it, I think that’s great, that has meant the world to us’.

Screenshot 2015-07-03 23.56.48

As for Sara’s hopes for the future:

‘My beyond wildest dreams would be that… we didn’t even have to talk about learning disabled people, because there wouldn’t need to be that division, because everybody would have a right to live where they choose, everybody has an imagined future, and the distinction between being learning disabled and being non-learning disabled would become sort of irrelevant, because it isn’t an issue’.

Final word goes to Rich:

‘In many respects the world would be a lot better place if we all behaved more like Connor and less like not-Connors; his sort of approach to life was so straight forward and simple… uncomplicated… you just sort of think I wish I could be more like that, I wish we could all be more like that… we should all be more like Connor and people like Connor and the world would be a much better place, and it would be a much more inclusive place, and actually we might all enjoy it a bit more.

Imagine, just imagine for a moment…. and ACT!

Week 15: The best dude #107days

We’re coming to the end of #107days second time around. Last night we had the premiere of The Tale of Laughing Boy, a 15 minute film about LB that we’ll share here on Day 107 tomorrow. Our penultimate post is from Tom, LB’s younger brother, sharing his thoughts and reflections. The photo is a still from the film, pencil out 15mins of your weekend now to enjoy it. For now, over to Tom:

I’ve always wanted to write a guest post, it has always striked me as something I should do. It’s the week of the film and having taken part in the film, my mum thought it would be fitting to do a post on that.

Tom_film
From the minute I heard about the film I was already 100% on board, obviously because I wanted to tell the great stories I have collected from 13 years of living with him and also maybe because I love films… but mainly the first reason. I was surprisingly comfortable in front of the GIANT CAMERA!!!! I think it’s just that if you know the stories from the countless amounts of times you’ve told them and you are talking about something you really care about then your not going to be nervous because you are so sure of everything you will say before you say it.

In some ways it’s fun because you aren’t just telling a story, you are reliving it in your mind, and you feel the same emotions you did at the time. Which, when discussing Connor, is pretty much constantly laughter and happiness.

I always remember Connor’s bus mat… to the average eye it was a map of a town with some roads on it, but to Connor it was Sandford, a huge city with a fully operational bus system that never failed. It had everything a city needs, shops, houses, animals, pedestrians and even a playmobil harbour. Each with it’s own set of strict rules on how it operates and how it can be ‘played with’. Having shared a room with Connor for 10 years or so and listening to the intricate thought process that went in to controlling a town of this magnitude, I can honestly say their is no city better than Sandford and I’m pretty sure I would live there if it was real.

That wasn’t Connor’s favourite city though, London was by far his favourite place on Earth. He loved it, I think it was the transport system to be honest, the idea of a city with a bus going pretty much everywhere was his dream place. One birthday of his we went to the Tower of London, his love of history and London combined, what could go wrong. Well, apart from the fact we never actually got in, huge amounts of traffic meant that after 6 or so hours on buses, when we finally arrived at the Tower of London it was closed. All us kids were so annoyed “all that travel for nothing!”

It was Connor my parents were worried about though, how would he react to the fact we weren’t actually going to the Tower. He did not care one bit, he spent the whole day in London on buses, a perfect day for him. That’s one of the amazing things about Connor, he is so easy to be pleased and enjoys such small things, and it really is amazing.

I read a lot of the stories about how people who never met Connor feel like they know him and that they love him through the tales on the blog, and this really amazes me. To me the idea of someone you don’t know changing your life tends to be a celebratory, writer or film maker. I love to think of how Connor would react if you told him hundreds of thousands of people were reading stories about him and laughing.

I picture him smiling with glee then turning away from his laptop and saying:

Did they like it, Tom?

yeah, they loved it

“Why?”

At the time this question would annoy me so much…

“Idk Connor!!! the stories are funny”

He would always ask ‘why’ to everything and my 12 year old brain ran out of reasons pretty quickly. But now I know what I would say:

“Did they like it, Tom?”

“yeah, they loved it”

“Why?”

“Because you are the best dude in the world!”

Day 88: A sibling manifesto #107days

Day 88 was adopted by Marianne and her children, Jacob, Izzi and Alex. She was interested in supporting #JusticeforLB and #107days because:

There are clearly many reasons why what happened to Connor is so shocking and horrific and these have been and continue to be highlighted  as part of the 107 days campaign.

One of the things that have affected me the most is the at times almost paralysing fear that this could be my family, this could be my son. I have three young dudes. Jacob, Izzi and Alex. That Jacob and Izzi could be in the same position as Connors brothers and sisters made me ask to contribute to the campaign and to adopt this day as the one for all the brothers and sisters out there.

Day88B&W

For their day Marianne was keen that she would spend some time with Jacob and Izzi, discussing Alex’s future. Here’s what they did and why:

When Alex was born 5 years ago and I realised before we even left the delivery room that he had Down syndrome. To be absolutely honest, my first thoughts were not for Alex but for us, his family.  I saw the faces of the parents, brothers and sisters of people with learning disabilities whom I had supported over 15 years. The emotions on their faces weren’t positive ones, weariness, anger, exhaustion, resignation and at times despair. Many of these emotions were deeply engrained, due to years and years of fighting these invisible but all pervading ‘systems’.

For the past 5 years I have been in a space of denial: determined that our story would be different. What happened to Connor has therefore struck deep and stuck hard.

I now alternate between fight and flight in terms of what the future holds for Alex. A recent regular pub meet up with other mums in a similar situation found us ruminating on what will happen when our children grow up, what will happen to their brothers and sisters? The issue isn’t about burdening them with a sibling with a disability, it’s about burdening them with faceless and nameless systems to ensure their brother or sister has the life that makes sense to them. Burdening them with taking on a fight that they haven’t chosen or asked for. Our only answer was for us to become immortal. I know.

Day88_Alex

Jacob and Izzi’s beliefs and acceptance of their brother have grounded me and continue to be a lesson. Particularly for me, a professional in the learning disability world for longer than I have been a parent of someone who has a learning disability. Their perception of Alex as a brother first and someone with a disability last with heaps of things in between is a constant reminder to me to aim high. When I asked them to describe to me what Alex would be getting up to as an adult, they were quite clear:

  • Alex will be a policeman or a driver of an ambulance, This is because he is caring and likes to look after other people
  • Alex will go to university
  • Alex will have a wife. If their house is bigger than mine, I will probably go and live with them (Izzi’s comment!)

It didn’t occur to them at first that Alex might need some support when he is grown up. When I asked them about this they immediately said that they were the best people to support him as they know and understand him best. If others need to help, then their list of requirements was as follows:

  • You have to learn sign language
  • Call us if you have a problem
  • Don’t forget to record his favourite programmes
  • Have a good personality – be lovely and caring
  • Make sure you have a goal net – so he can have a good game of football
  • There should be a mix of people – some like mum, some like us.

I am conscious in writing this down, that I am not providing any answers or solutions to the fact that a beautiful young man at the start of his adult life has died needlessly and avoidably. When I asked to contribute it was with the thought of giving a shout out to all the brothers and sisters out there, to make sure that their voices are also heard and listened to. I think Jacob and Izzi have got the measure of their brother, they have set out what matters in just a few words and they didn’t use any forms, risk assessments or charts to do so. I know we will get sucked in to the system eventually, I do know that. But for as long as I can, I will stick with Jacob and Izzi’s version of getting it right and help them to shout it loud and clear!

This is my pledge to Connor.

Day88colour

Day 55: Connecting voices #107days

Day 55 was adopted by Paradigm and friends, with an excellent write up being provided by Sally Warren, Jayne Knight and Nan Carle. You can read about their day in full in this attached pdf.

Head heart hands

The day was spent in a community workshop, facilitated by Paradigm and Nan Carle, which focused on connecting the voices of people from around the country to highlight injustices, share thoughts and agree action to stop the crazy, ill thought out decisions that prevent people living valued, ordinary lives. Lives with their family and in their community. In a community space, passionate people (family members, self advocates, researchers, support workers and community members) met for a series of conversations, which lead to a commitment to personal action and to new alliances to ensure collective action.

Group 1

A family who are also fighting for their son/brother, currently in an institution and his voice lost, were part of the workshop. The whole family are in danger of being alienated from the life of their son. They shared their personal story giving a real understanding, credence, strength and power to the need to resolve the abuse and neglect experienced by LB, his family and others.

The workshop was structured around five conversations:

1) How did LB’s story touch me personally, at work and at home?

One of the overriding feelings shared in the group was one of shock and dismay that people are so de-humanised and invisible. The family present explained how they themselves feel like the ‘invisible family, like ghosts’. People’s feeling are reflected in the images created in this montage.

Thoughts and feelings montage

2) What concerns does this bring forward for me, at home and at work?

As you can imagine participants shared a lots of concerns.

The key concerns were:

  • safeguarding systems that isolate people. Where members of the public, families and staff are raising concerns but not being heard. ‘We have a system in place to check people are safe and well, we have followed it so…all must be OK’. Dangerous!
  • complacency: what is it that makes it seem OK to offer a low standard of care? The idea of ‘acceptable rather than best’ is live and kicking…how can this be?!
  • a limited understanding by many of what good support is about and the need to go beyond minimum standard and compliance
  • about language. For people who are not labelled we would use the language of violence, abuse and neglect. Why do we use ‘cuddly language’ when it comes to people who are labelled? A Mum in the group was forbidden from using the word abuse!

3) What resources are present which would help us find real solutions to ensure ordinary, meaningful lives for all?

Creativity, connection and the knowledge of AND belief in what is possible are the resources we all bring. We must get ‘smarter’ at recognising and sharing the range of resources around us all. People, community, families, social groups, skills exchanges, agencies and more. This conversation stimulated more and more resources and ideas. Ideas that people hadn’t all considered (see full write up for more detail).

4) Personal commitments to action

Connecting Our Voices directly links to connecting our action, or as we said our ‘passion for action’. Each and everyone of us as a part to play in ensuring the LB’s life and death is not forgotten. People’s commitments to action were varied with people feeling able to contributes in different way but the message was that whatever you can do is important.

5) Shared action

As is typical at the end of a day in a room filled of passionate people determined to be part of a better future, time started running out!  We have created a network to stay connected to ensure mutual support and action. The three areas of collective action identified with initial connections and ideas in place were in relation to: 

  1. collective action to make people aware of what is possible
  2. family support
  3. housing for all

At the end of the day we are puzzled, concerned and angry but the fire in our belly against injustice has been stoked. We’ve made new connections and restored our passion for action and our hearts and minds are connected!

LB was with the group throughout the day with a symbolic empty chair. We are grateful to them for sharing his memory and working together to ensure that improvements happen. There will be a full write up on the Paradigm website in due course and we’ll add a link here when it is available.