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 74: Letting the light in #107days

Day 74 was adopted by Fiona, an eLearning designer and video producer from Northern Ireland, who is interested in how we might use technology and media to reduce inequality and injustice. This is what she had to say about why she’s supporting #JusticeforLB and #107days:

A few months ago, a couple of tweets from a lady called Sara Ryan were retweeted in my Twitter timeline. Shocked by what I read, I looked at her profile and made my way to her blog. Two hours later I was still there, reading Sara’s blog. It was fantastically joyous and devastatingly sad in equal measure.

Many years ago, I lost my brother to cancer. He was 13 and I was 15. Unlike Sara’s son, Connor (aka Laughing Boy = LB), there was no incompetence involved in his death. But it was at a time when cancer services for children could at best be described as primitive. When you overhear a GP telling your mum that she’s being selfish when she’s feeling afraid to give her child morphine, you know there is something not quite right.

So, when Sara described trying to push the horrors away so that she can remember the good times with LB, it resonated with me. I was hooked into Sara’s story and wanted to become involved, and help, somehow.

And grief is a strange beast. In the immediate aftermath of a death, it almost protects you – numbness, shock, shutdown, self-preservation, darkness. As time goes on, chinks of light get in. You try to remember what was good about the person and use it to drown out the horrors. For years, I remember not being able to see my brother’s face, then one day, I could.

So today I dedicate this blog to letting the light in. In my own family, they couldn’t talk about my brother – It took them almost 10 years to put a headstone on his grave. His name is rarely mentioned, even now, some 25 years later. I loved how in Sara’s blog, she shared stories of LB, and little snippets of conversation. How Sara is coping with her pain and grief is a true inspiration.

This is what Fiona has to say about #JusticeforLB and all dudes/dudettes:

As well as seeking justice for LB, I love how the #107days campaign is highlighting the general crap provision and support for people with learning disabilities in our society. There are so many inequalities around people with learning disabilities. I continue to be shocked when I read statistics on this, for example – more likely to die younger – on average 16 years sooner than everyone else. If this was any other section of society, there would be people on the streets! You can read more about the inequality research here.

The very people we should be protecting the most in society are often discounted as an ‘inferior species’ not worthy of our full attention.

But improving life for our brothers and sisters with learning disabilities is not all about statistics. It is about all of us. In her blog, Sara talked about people who worked with LB, the Charlie’s Angel story made me smile so much. Sara also talked of how LB’s brothers and sister and their friends seemed to find an easy way of happily being together. If this can happen at a family and local community level, then there is no excuse for wider society getting it wrong.

Nurturing the Potential

We all need help to reach our potential. Sadly, if you have learning disabilities, this doesn’t happen in the way that it should. I’ll leave you with a story from a dude that I know. Eoin is 23 and lives near Derry in Northern Ireland. He tells us about his love of learning about World War II and his work as a volunteer in local events. Eoin is thriving and has had several short work placements in local businesses who have welcomed and supported him. Here’s Eoin…

The video is taking a while to sync within the post, but you can watch it on YouTube here.

We’re grateful to Fiona, and to Eoin, for sharing their experiences with us. Our hope is that everyone will receive the support they need to reach their potential, otherwise, to be blunt we’re talking about lives half lived. Surely we’re past that?