Day 80: Busking for Justice #107days

Day 80 was adopted by John, variously known as Busker John or Kid Rage! John’s piece is one of two this weekend that offer a personal perspective from people who knew LB, and the lasting impact he has had on them. Here’s what John had to say:

So many of the contributors to 107 Days are so experienced and knowledgeable about learning disabilities and autism. I would like to add something about ignorance. I met Connor in 2007 and was, like most young people who didn’t know anyone like Connor, pretty ignorant about his experience or other young dudes like him. I learnt a lot within five minutes of meeting him; he liked asking questions, he had a sharp sense of humour and knew where my nearest coach company was. I didn’t know how to speak with Connor, (as if there was a way to do so that was different to anyone else). I was not wilfully ignorant, but had considered very little about people with learning disabilities due to having so little to go on. There’s very little air-time for people like Connor or their relatives. When there is, it’s usually about something terrible happening.

Due to a change in jobs two years ago I’ve learnt a fair bit about services for people with learning disabilities. I’ve learnt a lot from reading Sara’s blogging, and more recently other people’s. Among other things, the Justice for LB campaign sheds light on a health and social care system that revolves around the rhetoric of person centred care. From all these contributions and what I have seen myself, the system is not always good at hearing and more importantly considering the voices of people who are very vulnerable, or those who know and love them. I’ve seen how this allows ignorance to exist where people who are ‘voiceless’ need empathy and understanding in order to make sure they are looked after, safe and feel safe. If a dent is made in that ignorance due to 107 days then that’s one success.

I am proud to say I did know and learn from Connor…. we made each other laugh on a few occasions. The last time I saw Connor he had some more questions for me and we’d just had a big breakfast in Headington. A good last memory!

Day80_Busker John

Last week I busked for a while in Oxford.

[youtube http://youtu.be/HJwFI-EFZ6o]

I played some songs which Connor and his family like and which remind us of him. Apparently I looked a bit angry and gained the stage name ‘Kid Rage’ in time for the gig with The Amazing Geoffrey at Connor’s party on 31 May.

Day80_Party performance

One song I played always makes me think of what Connor’s reaction would have been to a red route-master pulling up outside his house on a hot July day last year. The song is about a young man who stole a car and “drove it like our days had been stolen.”* I think Connor would have wanted to take that bus and ride a long way with his family with no thoughts of the future or consequence.

The lyric that John references above is from ‘Headlong into the Abyss’ by Billy McCarthy, more on that tomorrow….

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?

Day 44: Healthy one-page profiles #107days

Day 44 was adopted by Lauren. In a stroke of genius (ok, fluke, this wasn’t exactly planned for) Lauren’s post builds on Phil’s post from Wednesday (Day 42) and the WeLDNurses chat last night (Day 43). When we asked Lauren why she had been moved to support #107days and #JusticeforLB, this is what she had to say:

I am a final year social work student and a single parent with a young son who is non-verbal on the Autistic Spectrum.When reading about the Justice for LB campaign I felt passionate on a personal and professional level about being a part of making a difference in promoting awareness to prevantable deaths in people with learning learning difficulties.

This is what Lauren decided to do across #107days that we are profiling on Day 44:

My final year placement is within a Supported Living for people with learning difficulties and it was apparent that there was a need to promote more awareness of how to support individuals with their health needs.

I have always been a huge fan of person centered tools and especially ‘one page profiles’. I felt that the use of profiles would be a great way to ensure support staff understand and acknowledge how best to support people, from their perspective on their health needs. An example of how this was going to help was where some individuals were anxious to go to the doctors, some staff didnt know why they were anxious, but other staff that knew the person well understood how to support and relieve this anxiety. In having a personal ‘health profile’ this type of support that is personalised to the individual can then be ensured to have consistency and good effective communication to promote the persons health needs.

The health profile we have put in place includes : What is important to the person, What is important for them to stay healthy and anything else people should know to support me.

Digital Camera

This is a photo of two of our tenants who were happy to have their photos taken but we have blocked out their names on their profiles.

We’re grateful to Lauren for being so proactive, especially as a student on placement she had to secure support from a number of people. We are also particularly grateful to the tenants who agreed to share their photo. We hope that the profiles prove useful to them.