Day 79: Buses, cake and prosecco #107days

Day 79 was adopted by Sara’s colleagues at Oxford, and Ulla explains below what they are up to and why:

What I’d really want to do today is to take Sara for a knees-up in London. Tequilas and all. That plan is still very much going to materialise but for now it will need to wait. Today we are doing something more constructive, as a collective of Sara’s colleagues. Various people from our group at Oxford have adopted days individually or in groups but we felt it was important to come together as a whole group too to adopt a day in support for Sara, and in Connor’s memory.

Let’s get one thing out there; Sara is one sublime academic. Many people following her blog online might not be as aware of her incredible academic standing and achievements, and the unparalleled speed and integrity with which her career has developed, under not a remotely standard set of circumstances. I personally have never met an academic quite as creative, engaged, straight-talking, believable, productive, inclusive and unassuming as Sara. Oh and did I say productive? She sits outside the box. If you check on Wikipedia (not that we’d ever do that), there’s Sara’s reluctant photo next to ‘lateral thinking’ (her picture is probably next to ‘publishing at speed’ too). Sara, like Connor, is one special person to know and to work with.

Our work is about listening to people’s stories, giving people space and respect and helping other people hear those stories. This, in essence, is what we hope that Day 79 will go towards achieving. We want to help more people hear Connor’s story. To listen and to act. What we are doing is hosting a ‘Buses, Cake and Prosecco’ event at our department, The Nuffield Department of Primary Care Health Sciences at the University of Oxford, on June 6. Connor loved buses, we love Prosecco and everyone loves cakes. Luring fellow academics and health professionals in with some cake is of course only a cover. What we really want to do is make everyone aware of Connor’s story, the appalling state of provision for young learning disabled people at our doorstep and to raise more awareness of and funds for #justiceforLB.

Not everyone in our group ever got to meet Connor, now everyone wishes they’d had. Most of us were in the office the day he died, gathered on the sofas for the devastating news, most went to his funeral and everyone has been shaken to the core. Many of us think of Sara’s and Richard’s pain every day, when we share a coffee or grab a sandwich together at lunchtime. When we read a new paper that triggers a thought or at the bus stop, waiting for the red bus. It’s not always said out loud but we always, always care. And that’s why we adopted Day 79.

 

Day 66: Woodcrafting buses #107days

Day 66 was adopted by Sharon, Heather and the Oxford Woodcraft Folk. They shared LB’s story with their young people on an evening a week or so ago, this is what they had to say:

Woodcraft folk is the cooperative children and young people’s movement. In Oxford there are grass roots groups for young people age 3-18+. We are committed to promoting inclusion, respect and social justice.

The young people of East Wind Pioneers (aged 10-13) were moved by the #JusticeforLB campaign and were able to show their compassion and support through these drawings. We hope you enjoy them!

It has been particularly heartening to see the contributions, support and compassion of young people in today’s activity, and yesterday’s from Ohio, and in several other days. We live in hope that they will grow into young adults who live in, and insist on a more fair and equal society, but we really shouldn’t wait and leave it all to them, we need to keep improving it now.

Day66

Day 38: Happy Birthday Big Man #107days

Day 38 was adopted by Big Man’s mum, who wished to share a post celebrating some positives, on his 10th birthday. We love positivity at #107days, in fact it’s underpinned nearly everything we’ve done in this campaign so far, so we are delighted to share this post:

What’s wrong with loving buses? Bus lovers of the world unite and celebrate! From the mum of an ex-bus lover (now replaced with a football team that play in red) I salute you LB and hope that you get the justice that you deserve.

On this day, ten years ago, I had a baby. This baby grew into a dude, we call him Big Man.

BM has some very special qualities – like LB, buses were a great love of his from an early age, from bus numbers and time tables he learned to read. Sometimes he would combine this love of buses and reading by reading out loud all the adverts on the bus; “Mum, what’s chlamydia?”

In time BM started nursery school. By this point he had gone off buses and onto dinosaurs and computers. Once we found he had ordered a load of dinosaur stuff the internet and only stopped when he didn’t have a credit card to get through the checkout. We sat back and admired his awesome brain. We told everybody how clever he was.

Not everybody saw his awesomeness like we did though. They had concerns.

The first IEP I threw in the bin.

I thought it was a record of parents evening and everybody had one.

In time he progressed from IEP’s to different pieces of paper. Assessments, meetings, pathways and diagnoses. It was a language I had to learn fast.

Then he got some letters after his name: ASD.

They said he could stay in mainstream school, he should be able to take some GCSE’s.

The BM does maths for fun.

If Minecraft hadn’t already been invented he would have invented it by now.

He loves a glorious football team that play in red; football trivia and FIFA has replaced buses and dinosaurs.

If he doesn’t like you, he will just ignore you. If he loves you he will love you forever without caring who is watching or who knows. He can’t tell a lie. That’s a good thing, right? Not everybody seems to think so. Some people think he needs fixing, working on, improving.

He is very moral, always stands up for the underdog. He is amazing, complex, cuddly and funny. His capacity to eat dad’s pancakes and chips from the chippy is unrivalled.

So many people seem to live in fear of an ‘autism epidemic.’ Having a child with such a label is portrayed as disastrous, burdensome, tragic. What is this ‘normal’ people seem to aspire to? Is it being the same as everybody else? Is it judging people to be less worthy because of being different? We’ll pass on that thanks.

IEPs are tragic, children aren’t.

Happy Birthday Big Man.

bday10

Day 17: A dude named Adam #107days

When we were organising #107days Meraud got in touch with us, she’d read about #JusticeforLB and LB’s love of buses and she was involved supporting Adam, a dude who loves buses as much as LB. Adam and Meraud adopted today to go on a mammoth tour of Brighton on a bendy bus, however, an opportunity to goto London (also loved by LB) with a local youth group (BHip) arose and today they are off to the big smoke. We share their story today, as a story of hope and possibility and we’re grateful to them both for sharing.

Adam2

We start with an intro to Adam:

Adam is a dude. He is 15 (almost 16) and a typical teenager – he wants to do what he wants to do and when he wants to do it! Adam has some pretty cool people working with him too. Due to Adam’s additional needs (Fragile X, Autism, and learning difficulties) and challenging behaviour, he has 1:1 for 3 hours every day after school, all day Saturday, and full time during the school holidays. When Adam is out and about he has 2:1 to manage any potential risks. Adam has very special relationships with everyone he works with.

A little from Meraud about why she wanted to get involved:

One of the things that really struck me about the many failings in the assessment unit was the lack of interaction between staff and the young people.  I have worked with Adam, and many other individuals with learning difficulties, and I find it incredible that the culture of the staff was to be so ‘non-involved’.  I love my job because I get to work with such unique and interesting people – sometimes I have to find a different way of approaching communication and I most definitely have to be prepared to make fool of my self on occasions (how often do you see a grown women pretending to be an elephant on public transport?!) but these are the things that make my day exciting and fun. LB was entrusted in to the care of others and he should have been treated like a precious cargo with staff striving to find a way of making him laugh and smile, as his family knew he could.

Meraud has produced a brilliant document that introduces Adam and his relationship with his team. You can read it all here, featuring Adam, Sian, Ashley, Sherie and of course Meraud. Describing their own relationship Meraud says:

I have worked with Adam for 13 years now – in that time I have seen him grow from an anxious little boy into the confident young man that he is now… Spending time with Adam is a pleasure and, even when things are a little bit tricky and his behaviour is more difficult to manage, it is always a privilege to be a part of his life…  He is a superstar!

Meraud is also at pains to acknowledge the love and support of Adam’s family. It’s worth a read and paints such a positive picture of what could be, with the right support and humility.

Everyone working together gives Adam the best chance at succeeding in everything that he does.

Adam1