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 5: 107 stories from an assessment and treatment unit #107days

Yesterday we featured WiseGrannie who is a relatively new online voice to the discussions around care and support for people with learning disabilities. Today, we feature Mark Neary and his son Steven, both experts by (bitter/shameful/appalling) experience who have been at the front of the queue when it comes to generously sharing their knowledge and wisdom with others.

Steven + Mark Neary

Mark has a very personal reason for getting involved with #107days and #JusticeforLB:

Steven went away for 3 days respite on 30th December 2009. The following day I stupidly agreed to him being moved to an assessment and treatment unit. 3 days turned into 2 weeks and it finally took 358 days for him to be returned home. In his time in the hellhole, he was unlawfully deprived his Article 5 & Article 8 human rights. The scars are still there for him and me.

I’d like to keep assessment and treatment units in the news until they’re gone for good.

Mark has shared their experience in book form, if you’d like to read more then Get Steven Home and There’s Always Something or Other with Mr Neary provides the background. The titles alone speak volumes. For #107days Mark is sharing 107 stories from Steven’s time in an assessment and treatment unit. He started slightly ahead of us and so far has shared ten stories including Shoes and Beards and Bryan Ferry and Challenging Behaviour. I promise you will laugh and cry and shake your head in disbelief, it’s powerful stuff.

Just last week Mark has also shared two post on his personal blog that bear striking resemblance to LB’s family’s experience to date: A Smile, A Shrug, A Sob and A Stab and the follow up A Smile, A Shrug, A Sob and A Security Alert. It seems there is a pattern to what can be expected, suffice to say that sense prevailed in the end for Mark and Steven, and we take strength from them, and won’t be going anywhere until things change, permanently, for young dudes and dudettes, and until we have some Justice for LB.

We’re very grateful to Mark for sharing his and Steven’s experience with us through #107days. You can follow him on twitter here @MarkNeary1 and you can wish him a Happy Birthday for today too!!

Day 4: 107 lessons from dudes and dudettes #107days

One of the most encouraging things that has already happened as a result of #JusticeforLB is the number of new online voices. We know of at least three new blogs and many more twitter accounts that have been established to join the conversation around #JusticeforLB and some specifically as a result of #107days. For anyone who doesn’t blog I think its fair to say that for some it is a rather hard hurdle to jump initially. Who is going to read it? What if people don’t like it? Why would anyone care about what I have to say? Well let me reassure you if you’re considering it, every voice is valuable and the internet is a truly brilliant way to connect with others, who are genuinely interested in your experience and views, and if they aren’t they’ll not hang around, but that’s ok too. Not saying anything means you play it safe, but your voice isn’t heard. A real loss, everyone has something worth saying.

Some of these new online voices are sharing, quite brilliantly already, experiences and wisdom gleaned from many years working with, living with or sharing lives with dudes and dudettes. One of these new voices is Wise Grannie, you can connect with her on twitter @WiseGrannie or read her blog http://WiseGrannie.wordpress.com.

WiseGrannie

WiseGrannie describes herself as:

Possibly made every mistake in the book as teacher, mother, daughter, wife, trainer, friend, carer and colleague, but I did try to be kind.

and gives her reason for blogging as:

Hoping to help Justice for LB by blogging the good, funny and surprising things I learnt from all the young Dudes and Dudettes I foolishly imagined I was teaching (long ago when the world was young).

WiseGrannie has committed to blogging a story a day and so far she has had us roaring with laughter and sniffling back a few tears, they are definitely worth a read. Start here for her first post that provides context: To begin at the beginning. Can’t wait to see what more she has to share.