Week 1: Campaign context #107days

In our last post we re-launched #107days and shared the video that captured some of the wonderful action last year. In this post we wanted to provide some further context for the campaign. The simplest way of doing that is by sharing one key document, the #JusticeforLB Audit Report, and a Newsnight feature, both produced in response to the National Audit Office report into learning disability published at the start of last month.

So, grab a cuppa and have a watch of this, it’s only 5 minutes long, but captures succinctly the last couple of years for LB’s family:

Our Audit Report is called Actually improving care services for people with learning disabilities and challenging behaviour. You can download it by clicking on the cover below, or the link here. The report examined the challenges faced in delivering key commitments of the #JusticeforLB campaign manifesto, the extent to which these have been achieved, and the barriers to achieving JusticeforLB and actually improving care services for people with learning disabilities.

Screenshot-2015-02-04-18.59.44-211x300

Our headline message was that we believed that the JusticeforLB campaign demonstrates that a considerable amount can be achieved if you strip away layers of tired bureaucracy, hierarchy and vested interests and just get on with it. In a genuinely collective way.

So many of you spontaneously, creatively and magnificently got involved with #107days last year, and we’re extremely grateful for your support. One of the things that we tried to capture in the audit, but would like to understand further, is the impact that the campaign has had. To that end, please share with us what difference the campaign has made for you.

Day 92: Inclusion East and the Missing Sock Bus #107days

Day 92 was adopted by Inclusion East. Here’s what they did, and are doing, for #JusticeforLB and #107days:

The members of Inclusion East are a small,committed bunch of people with complex needs, their families and good friends. In June our monthly Directors meeting was devoted to thinking and talking about Justice for LB.

We were keen to be up to date with what is happening with the campaign. Who is doing and saying what but more importantly

a) What were we doing to add our voices to the outrage, sadness, injustice that led to the very need for LB’s campaign?

All this is very keenly felt as we are families of people who live with autism, epilepsy and complex health and communication needs.

b) What were we doing practically to speak up, challenge ,include people and prevent future disaster?

We took stock and made our list which included:

  • Active Tweeting
  • Mentioning Justice For LB at all meetings, conferences and consultations. Long List!
  • Particularly raising awareness of good epilepsy support at conferences and workshops and yes, on twitter.

Then we adjourned to The Missing Sock which is a funky, Inclusive hostelry in Cambridge. It was there that we plastered The Big Red Party Bus with our home made #JusticeforLB posters.

Deep thoughts and a lot of laughs for Laughing Boy.

Day92

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 11: A mother’s thoughts #107days

Day 11 was adopted by Shelley Mason. When asked why #JusticeforLB was important to her this was what Shelley had to say:

Justice for LB is important to me because I’m a mum and a human being and what happened to Connor should not be allowed to happen to anyone. Post Winterbourne, it’s shocking to know things are still so bad. Of the 3 families I know who have children with learning disabilities, 2 have made national headlines – my friend Mark Neary and his son Steven and now Sara and Connor. When will people with learning disabilities be treated well everywhere?

I liked that Shelley commented as a mum, and as a human being. This isn’t simply about parents and children, or mothers and sons, it’s about humans and humans, and we’re all a part of that. Anyhow, I digress. I have to admit I was delighted and relieved that Shelley had realised that it was Mother’s Day and she has tailored her post accordingly.

It is Mother’s Day in the UK. Mums all over the country will be receiving cards, hugs and kisses from their children but there is one household I know of, and God knows, there will be thousands of others, where a mum will not receive anything from one of her children. And I can’t really imagine the pain of that scenario.

Shelley introduces LB:

What can I say about Connor himself? I never met him but so wish I had. He was clearly a very funny and witty young man because many a time I’ve laughed out loud at the things his mother, Sara, has written about him. He was not a faceless boy even though we had never met in the flesh. He had depth, he had character and he had passions. Eddie Stobart, lorries, buses and the Mighty Boosh. He was such a real person to me that I took photos of lorries I saw in motorway car parks and sent them to his mother so she could pass them on. So please, before you read any further just take in this one point. Connor Sparrowhawk was a real, living, breathing, laughing young man with the rest of his life stretched out before him.

Describes his time in the unit and reflects on what has come to pass since: A catalogue of falsifications, neglect and shoddiness labelled ‘care’ followed by attempts to pass his death off as ‘natural causes’ and more wriggling than a bucket of eels.You can read Shelley’s post in its entirety here and what more she ends with a Cheesecake Truck, go check it out.

Screen Shot 2014-03-30 at 11.33.26

However you spend today, thank you for taking a moment to read this, and remember LB, Sara and the many many other mothers without their children and children without their mothers today. We hope that our collective actions for #107days will prevent another family facing this pain. Thank you.