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.

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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!”

Week 5: Quilt Graffiti #107days

This week of #107days is focused on the amazing Justice Quilt which is coming to the end of its residency at People’s History Museum, Manchester.

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Jack, who took the awesome photos in the last post, wrote us a guest post about his visit to see it at the weekend:

I am truly honoured to have my photos on here. When we got there on Saturday, first of all I was trying to capture the quilt from every possible angle I could find (Sara if you want about 30 more photos of the exact same thing but with more blur, random building structures, people in the way and poor lighting, I’ve got you covered).

Then I began to look properly, still taking photos of course, but looking at each individual patch.

Ceri, Phil and I were there pointing out all the incredible intricate designs for about the next half hour and then when we went upstairs (I was looking for more angles) we found that we’d just missed another load of amazing ones! dude. was my first favourite, although I ended up with about half the quilt as my favourite in the end.

I think that’s what struck me the most when I was there, this absolutely huge quilt, full of so many different wonderful messages and memories. If I could stitch, I think I would’ve liked to have done one like dude. Sara, you’re one of the few people I know that still says dude and I think I associate it with you just as much as I do the blog!

For me that’s a happy thought and a sad thought. If I’m honest, I don’t read the blog as much as I used to. When I think of the blog I think of the fantastic stories I read when Rosie first told me about the blog one night in first year (2011). (I’m paraphrasing but) She described it as an embarrassingly great selection of stories from home that she looked at whenever she felt homesick or upset. A few months later I was trusted with the URL, read a few stories (Johnny English cave story remains a firm favourite) and signed up for emails much to Rosie’s dismay! I was experiencing the more entertaining part of the life of the dude in real time now, but I never met the dude, so I associate dude. with you and the blog. Even when I read the stories again now I’ll hear the TO FANCY OR NOT TO FANCY? THAT IS THE QUESTION in Tom’s voice (it does sound like something he’d say). I’ve never heard Connor’s voice, I don’t know what it sounds like.

But then again that’s something I find strangely wonderful. Having been around so much since his death, heard so many stories about what a caring, kind and funny young man he was (sometimes I’ll even work them into the conversation to get Rosie to re-tell them, sshh!) and reading them myself before this all happened I feel like I know him despite all this. I think that’s testament to all of you and I’m sure many of the people who contributed to the quilt or to #JusticeforLB or any of this without ever meeting Connor, just like me, feel the same.

I often think about how I nearly met Connor. If I’d been friends with Rosie just a few months earlier in first year, maybe even a few weeks earlier then I may have come down with Ceri and the other Manchester lot and met him during Easter 2012. Later on Saturday Ceri was telling me about how when she’d met him that Easter he was mostly watching videos of trucks on youtube and listening to techno music, from what I know I’d say she had a pretty classic experience of Connor, an experience she described as pretty cool. I’d say she was probably right.

But then I think about how that thought process is utterly ridiculous.

I should have met Connor in August 2013 when I was going to visit Rosie.

When I brought you lemon cake on the 8th of July 2013, he should have had a slice, or ten.

I should know what he sounds like.

I should be reading hilarious stories that come into my inbox every few weeks.

I should have my own stories to tell other people.

This should never have happened.

When we first saw the quilt Ceri pointed out the teardrop with HOWL written in it, she told me how whenever she sees a mydaftlife post with a howl caption, she feels compelled to read it. When we went upstairs Ceri saw a chalkboard supposed to be a discussion board about whether or not Nigel Farage and other politicians have right to a private life. Having seen the quilt she felt compelled to write #JUSTICEFORLB all over it instead.

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I saw the quilt and felt compelled to write Fuck Southern Health.

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Day 97: Jack’s Cats for Justice #107days

Today was adopted by Gina and Jack. Gina Aylward, is Assistant Social Work Practice Learning Co-ordinator and a member of the Centre for Disability Research(CeDR) at Lancaster University. She had this to say about why they are supporting #107days and #JusticeforLB:

I had seen pictures of Connor advertising a seminar event being presented by Chris Hatton. This led me to some further website reading, and then attending his seminar Laughing Boy versus the Zombie Institutions: Closing the new institutions for people with learning disabilities [Day 49].

Having worked with people with disabilities in community and residential settings for many years, the website and presentation by Chris struck chords in me of sorrow/anger/frustration, as to how this young person‘s path led to his untimely and avoidable death. It is not always easy to identify resources and support for people with complex needs, but everyone should be able to access a basic safe and safe environment, even when their way forward may be unclear.

On a personal level, Connor’s story has resonances for me as I also live with a unique and creative dude. My son is passionate about nature and the environment.

Gina, and her son Jack, decided that they wanted to support #JusticeforLB. Here’s what they decided:

My son and I have talked about the #JusticeforLB campaign, and both of us fully support it. As he is still of school age, he raises money for the things he believes in by making small cats out of recycled materials.

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Each cat takes approximately 2-3 hours to make, and is a valuable addition to any household. They can also make great gifts! We aim to raise money for the campaign by selling the hand made charity cats. An individual cat costs £3, or 2 kittens for £3.

On Saturday a number of us joined Gina, Jack and Rob to celebrate the end of the exhibition Systema Naturæ: A History of In-animate Nature by Rob Williams and Jack Aylward-Williams at The Gallery Exhibition Rooms, Atlas Works, Carlisle. The exhibition was an opportunity to view their prodigious collection of specimens drawn from numerous pedestrian expeditions in Britain and abroad.

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You now have the opportunity to own a piece of Jack’s art by purchasing one of his Cats for LB. You can buy them for a minimum donation of £3 and you are welcome to pay more if you’d like to make a greater donation to LB’s Fighting Fund.

If you wish to order a cat then you can do so in one of three ways:

  1. Pay by bank transfer into the LB Fighting Fund account: Sort code 08-92-99 Account No. 65698046 and then email Hannah with your order
  2. Pay by Paypal by transferring funds to LB’s Fighting Fund account: LBFightingFund@gmail.com and then email Hannah with your order
  3. Buy cats for cash in person from Gina Aylward or Hannah Morgan.

If you are buying online (Options 1 or 2) please can you include your Surname and the word Cat in your transfer details, so that we can match your purchase to your email. When emailing please include ‘Cat’ in the subject line and if you are ordering more than one please state the number in the email.

Day 67: The clients are revolting #107days

Day 67 was adopted by Amanda, pictured here with her daughter, Jazz.

Jazz&Amanda

Amanda is founder of The Open Nest and in this post she shares her own thoughts, feelings and experiences as a professional, as a mother, and as a supporter of #JusticeforLB.

When I was a social work student I specialised in working with groups of people who needed to access social care but were often voiceless or suppressed within the system. As with all those who seek state support these people were referred to as ‘clients’ of the services. This is actually where it began to irk me. Clients as a word suggests business. Not as is in ‘clients have a strong voice and will not be messed with’, but rather clients are one cog in the big wheel of the business and the huge industry of care that we seem to have developed in this country. By a twisted world upside down effect it seems those in need can now be quite comfortably viewed as a bit of a problem, a glitch or even a drain on the ‘care’ industry.

As part of my practice based learning. I devised a ‘Clients Committee’ model. The purpose was to facilitate an independent user led group made up of adults with learning disabilities (another label that now irks me seeing as I’ve met many social care managers who seem to find it harder to learn than their clients). Anyway, the dude ‘clients’ attended an adult training centre and once a week I would take their meeting minutes for them based upon their conversations around changes in the support services they felt were needed. A lot of the talk centred around rights to have relationships, to choose their own individual style and to have more funding for the meeting to get better sandwiches. Nothing changed. It was an ‘interesting’ experiment, a token gesture. It was still a shit sandwich.

After proceeding to work with ‘clients’ of women’s refuges, traveller sites, drug and alcohol projects and HIV services, I had seen enough. In almost every area of social care I saw the ‘clients’ often remain static in their position of powerlessness and unmet need whilst workers gained power, very often by being the agents of budget control and the keepers of the status quo.

Some things I have experienced in working practice, although seemingly small, stand out. I was once given the job of making sure ‘clients’ with HIV or AIDs who came into a drop in centre could access healthy and nutritious food. The budget to feed up to 12 clients per day was £12. I became a master at fresh vegetable and fruit shopping. One day the big bosses from the NHS were coming for a meeting. As well as my usual £12 for the ‘clients’ the manager of the project gave £50 that day for a meeting ‘buffet’. I felt furious. When I questioned this I was met with a wry smile (a manager’s special) and a response that patronised me as being a quaint but outdated revolutionary.

Incidents of this nature were not rare and led me to feel personally unable to work inside such systems. Subsequent academic study led me to analyse, once again, how certain groups of people are marginalised, although this time it was culturally through the mediums of the popular press and television.

Everything I experienced led me to a life changing decision to become an adoptive parent to a very young dude (whose mum was also a dude) and who needed some full on support and advocacy.

In that process my daughter and I both, like her birth mum, became ‘clients’ of the social services as well as the health authority. In the eyes of the care system I became just ‘mum’. Declawed and unprofessional. My daughter became a person talked about in her presence as if she were invisible and whose name they could never spell right in her correspondence no matter how many times she told them.

When Mencap were eventually wheeled in to support my daughter they covered the backs of the poor practitioners whose incompetence eventually caused her serious harm. Even a National charity for dudes is not beyond bending or editing the truth, of selling their ‘clients’ out if commissioning is at stake. And they are not the only ones.

There had been a gap of many years between my training to work with social care ‘clients’ and my becoming one myself. I thought things would have moved on and ‘lessons would have been learnt’. More fool me. Despite the annual reporting of abuses in social care settings and harm coming to clients of the health and social services being featured on news items and documentaries, poor practice, tokenism and budget led interventions seem still to prevail.

Some practice failures may be small but when on the receiving end they can be the proverbial straw. My personal ‘shit practice gong’ of this month goes to a health visitor who rang one of my family members at home to congratulate her on the birth of a lovely baby daughter and to arrange a hello visit. Would have been a thoughtful gesture if her baby hadn’t been still born the previous week.

But now to Connor. I didn’t know him or his family but I have felt personally touched by his appalling and avoidable death and the strength and bravery of his family and friends in the darkest of times.

Initially the shock was in hearing he had died. This shock became compounded by the response from Southern Health to his death and to his mothers grief. It is truly incomprehensible to me.

I cannot pretend to feel the grief or have any true understanding of what Connors family are going through. But I know I genuinely feel empathy, a sense of there but for the grace of god go all of us and a really huge feeling of anger.

My daughter was on the verge of being admitted to an assessment centre not very long ago and the conversations with me around this potential intervention chilled me to the bone. She would not be able to have contact with me initially nor could she take in her security pillow, her phone or any familiar objects from home. The inference from the start was that ‘we need to see how she is away from you because it’s probably some family or home issue that is the real problem”. I read with horror Mark Neary’s recent blog about his sons anxiety at being severed from his place of safety in the name of a professional assessment. But our children didn’t die.

I know there are great and emotionally intelligent expert professionals in both social work and health care and I know professional bashing is a hard stance to take in times of low resources and outsider aims at ‘criticise to privatise’, but how could Southern Health be so cruel.

You can’t buy or train in truth, empathy and remorse anymore than you can illicit forgiveness and understanding via a cold bureaucratic and funded PR fob off.

The response to this case from Southern Health bosses shows the emotional maturity of a small child who is denying they ate the chocolate when it’s clearly all around their mouth. I find it embarrassing.

The people who support Connor and his family are collectively angry. We don’t feel like being particularly polite or forgiving of the unavoidable death of a healthy young person through negligence and poor practice. This isn’t something that happens to all of us but the lead up to it, the ignorance and pseudo care that allowed it to happen is recognised by many of us in our experience of being a ‘client’ or the relative of a ‘client’.

Southern Health can accuse Sara of being difficult to handle, suggest she might perhaps move on now, infer that Connor was just another ‘client’ who sadly had an unfortunate accident, that those seeking justice for him and other dudes are akin to internet trolls, but it won’t wash. Its bigger than them. We are far too revolted and Sara’s strength as a campaigner in love and honour of her son means she is now leading what could easily become a significant and broader revolution in how society views, talks about and supports all dudes in this country.

I for one am living in hope of significant cultural change being instigated by this campaign. No matter what Southern Health do to discredit the integrity of Connor and Sara’s experience, no matter how much they cover their eyes, ears and especially their backs, it wont change that.

You still have time to get involved with the #107days campaign if you wish to join Amanda, and so many others, revolting for a better society. Next weekend, Sat 31 May, is the party night to end all party nights, and it would be great to see some of our online supporters in the flesh!

Day 41: A question of trust #107days

Today’s post is from Fiona who has a dude the same age as LB. Fiona raises her concerns for the future and asks how we can trust the NHS;

“I wanted to get involved in this campaign as it touched my heart and soul and my thoughts go out to Sara and family of Connor. This is my 18 year old son, who has global learning difficulties, epilepsy and autism as well as type 1 diabetes. Although we struggle sometimes, and some days are more challenging than others, I cannot comprehend how this tragic end to Connor came about while he was in the care of a unit specialising in care for vunerable adults. I would not leave my son unattended in the bath, privacy is one thing, but abandonment and lack of care is another. This is negligence which they were forced to admit only after an independent investigation.

How are we supposed to trust in the NHS to look after our vulnerable children and adults after this?”

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This is a huge question which  gets at the  heart of what we’re trying to achieve.

As we don’t have any answers right now, one small way forward may be to record those small ‘drops of brilliance’ that have made a difference.

A collection of brilliant drops may offer  ideas, thoughts or changes to what people do. The otherwise unsaid or invisible stuff.

 

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.

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Day 18: A marathon for Connor and Hope #107days

Day 18 is a special day because it marks the first day in which someone is volunteering to partake in an extreme physical test of endurance for #107days. Today is Ruth’s turn; asked why she was supporting #JusticeforLB this is what she had to say:

I didn’t know Connor, but I wish I had after reading his mum’s blog posts about this awesome young dude. I don’t have the words to describe how I felt on reading of Connor’s death.

My daughter is hearing impaired and had a tough time of it at high school – lack of training, understanding and patience from the staff we felt. In spite of endless meetings to try to resolve Hope’s poor attendance record, we ended up keeping her at home for the last year of her GCSEs. She achieved all eight of them – all on her own terms and through utter determination.

Fighting tooth and nail to secure her future – and feeling somehow like we were just awkward parents – I totally get what this campaign is all about.

So what is Ruth doing I hear you ask? Ruth is running 26.2 miles, in the rain, across the beautiful but challenging North Yorkshire Moors:

I haven’t the words… but what I can do is run! Connor and Hope will be uppermost in my mind on Sunday 6th April when I run the Hardmoors Wainstones Trail Marathon. I love trail running – albeit slowly! – and it seemed like a good opportunity to show off this awesome young dude and promote the campaign.

That’s right, at 9am this morning Ruth will set out to run 26.2miles in the wind and rain, with Connor and Hope as her inspiration.

1stHill

This was the view of the first hill as shared by John Hurse of Tynebridge Harriers after last year’s race – we’ll update with Ruth’s photo’s later on. We’ll be virtually cheering Ruth on, and are very humbled that she chose to run for LB; if you’d like to make a donation in acknowledgement of her efforts details of how to donate are available here, but either way please take the time to send Ruth a good luck tweet here. Final word goes to Ruth:

Hope – you are an awesome young dudette and we love you muchly xxx

Update
Ruth sent us an email this morning reporting back on the day:

I got flyers out on all the tables at the start/finish point and saw lots of people reading them – then pointing at my back-pack. Without fail, every one who asked me about LB said the same thing: what a basic and terrible mistake to have made in his care. Three people I spoke to all had some connection to the health/care/nursing profession, and all said their training over the years highlighted the need for utter vigilance when it comes to supervision of people with epilepsy. Needless to say, they were horrified and appalled that such a thing could have happened. There was a lot of support and love. In fact, one woman hurtled past me, then stopped to ask who the dude was on my back! That made me cry 🙂

Once again, thank you for letting me help in my own way – and an utter privilege to have had LB as my motivating, ‘go faster’ inspiration.

The privilege is ours, Ruth has kick started the endurance supporters in fine style – next weekend has two more marathons, Lucy and Deborah, and after that we still have a canoe race, a triathlon and possibly cyclists, more to come on them in due course. Thank you Ruth for sharing #JusticeforLB with so many.

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