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 70: Shadows of action #107days

Day 70 was adopted by Yvonne Newbold who wished to write this blog post to share some of her own personal reflections on LB and Sara’s experience, and the similarities to those of her and her son Toby. This is why Yvonne wanted to get involved:

I’ve never met Sara, nor did I ever meet her son, Connor (LB), yet the shock I felt when I first heard about his preventable death is something that will live with me forever, and which has developed into a searing sense of outrage and anger as I watch the NHS handling of this tragedy unfold.

You see, I also have a severely learning disabled son, who also has severe autism, and I also recently had to entrust his care to others due to my own ill health. His name is Toby and he is 20 years old. There is a real sense of ‘this could have been, or one day might be, our story’. I also know what it’s like to be fobbed off, discredited and abandoned by the NHS as Sara has been since LB’s death, because when you are a parent of a different child, these things seem to happen all the time.

Although I have never met Sara, there is an affinity which exists between parents of children with disabilities, an understanding that transcends normal communication, a sense that we each simply ‘get it’ in a way that the so-called expert professionals very rarely do. To me, LB, Sara, Toby and I, along with every family coping with the issues that disability brings, are all part of the same tribe, a family of sorts. What happens to one of us is personal; it hurts all of us.

This is what she has to say:

Something rather insidious has happened to our society in the past couple of decades since LB and Toby were born, and being a parent of a son who is reliant on the Statutory Services, I’ve watched it spread and become acceptable from a front-row seat.

A culture of fear has taken hold among those working within our health, social care and education services, a fear that paralyses them and prevents them from doing the job for which they are paid; which is to protect and support the most vulnerable members of our society. Instead this culture of fear has turned their priorities upside-down. They now seem to do all they can to protect and support themselves and each other, and maintain the reputation of the organisation they work for.

When organisations have their funding and future survival of services tied to the vagaries of abstract key indicator targets to the extent that we have allowed it to happen, there is a huge vested interested to paper over the cracks, bury any mistake that happens, and create systems that cover their backs rather than reach out to help those in most need. When this trend is also happening alongside a society becoming more litigious year on year, the focus becomes even more self-interested.

They have to keep up appearances make everything seem excellent and tickety-boo, with no room to admit that human errors sometime happen. The people who work in these environments are no longer able to make autonomous decisions; we have all seen the growth of the interminable meetings where even the smallest things are now decided by committee. Joint decisions are always watered down and become half-baked shadows of the actions really needed. No one is able to stick their head up over the parapet anymore and say something sensible, because they are all too scared. Using one’s own initiative is frowned upon but how can you truly care for someone in any meaningful way without being allowed to sometimes think on your feet?

No one takes personal responsibility in these organisations anymore because they aren’t allowed to. Meanwhile young people like LB die, because if no one takes personal responsibility, so no one can apply common sense, and it’s also, of course, no one’s actual fault.

The unspoken mantra is ‘cover our backs, cover our backs, cover our backs’. The staff feel compelled to collude with management to hide any weaknesses or failings. Reputation is king. Any weakness or failing that comes to light is minimised, or side-lined or hidden away. Truths are spun and twisted, any insider who tries to speak out is pilloried as a whistle-blower. If failings cannot be neatly filed away, they sometimes find a scapegoat, and publicly pillory them as well. No wonder the staff are so frightened.

The upshot is that staff bring that fear into every encounter with those in their care. The emphasis changes, again to protect themselves. For every few minutes they spend with those they care for, several more minutes must be spent writing down everything that happened during those two minutes, just in case something ever comes back to bite them on the bum sometime in the future. What they write doesn’t always reflect what did actually happen during those two minutes either; it has to be skewed to fit the text-book version of what would sound best.

So all the reports are written, all the boxes are ticked, and they can produce their swanky glossy brochures telling all and sundry how marvellous their service is. Their backs are turned away from those who really matter and meanwhile LB drowns, and countless others continue to be short-changed.

Our young people deserve better, and things must change for the better, too, and fast. The staff who work for these organisations don’t want to work in a culture of fear anymore either. The vast majority care passionately about making lives better, but their hands are tied by fear.

Mistakes happen, we all know that. When they do, parents like Sara deserve the level of respect that can only come from complete honesty, truth, compassion, empathy and sincere apologies. It is the only acceptable way to behave. Particularly in LB’s case, when that mistake was one that had been waiting to happen for far too long.

As Yvonne says in her post, this mistake had been waiting to happen, but not just that, now it has happened LB’s family and friends are left to raise funds to cover legal costs to bring Justice for LB. So, rather than use an image of LB for this post, I’ve used the party tickets, for the party night happening this weekend, Saturday 31 May and there is still time to get tickets and come along, all support gratefully appreciated.

LBPartyNight