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 16: Ruth’s story #107days

Day 16 was adopted by a pair of sisters in Northern Ireland. Theresa and Ruth (not their real names) were touched by LB’s story and got in touch to ask if it was ok to share a positive experience of an assessment unit. We’re delighted to be able to share their story, and very pleased that Ruth had the life saving support of the hospital assessment unit. Theresa shares their story below:

So here we go with our story. My sister Ruth is two years younger than me. Throughout our lives we have shared many high points – the first time she travelled to school by public transport, the first time she went on holiday with her friends, when my two daughters were born. But we have also experienced tough times.

When Ruth was in her early twenties we secured a place in newly opened supported housing only five minutes away from us. My parents felt all our prayers had been answered. All went well for a couple of years. The manager had a lot of experience with people with a learning disability, however he retired and our nightmare began. A new manager arrived. She had no experience working with people with a learning disability, but had done lots of research at university. She came with new ideas including person centeredness, but she didn’t really understand Ruth and her needs.

The new manager felt Ruth had the right to choose the support she needed and if that meant she didn’t get washed for days, didn’t do her dishes and ate what she wanted, that was fine as it was her choice. The new manager also closed the communal area in the evenings and Ruth became socially isolated. The new manager also developed her own day care and Ruth lost contact with friends she had had for years. Slowly Ruth became depressed and ended up weighing 28 stone. Her life was under threat. The manager would not listen to family (how many times does this story have to be told).

The consultant psychiatrist felt Ruth needed to go into hospital. I knew my mum and dad couldn’t take her and although I was 8 months pregnant I volunteered to take her myself. We arrived at the hospital. It was an old building with a locked door and bars on the windows. The sleeping accommodation was a dormitory and the bathroom was shared. Ruth was in tears and I was trying to be brave. The door to the ward opened and a smiling nurse greeted us, “off you go we’ll take care of her”.

I don’t know how I drove home. We went to visit Ruth after a week and what a transformation! She was happy and smiling. She looked well cared for. She had lost weight and she had lots to tell us. Ruth stayed in hospital for 10 months. She gained confidence and lost 6 stone in weight. When Ruth returned to her flat, with a proper person centred plan, she was doing well. However the staff did not listen to the hospital staff.

Soon we were hearing again “She’s an adult. She can make her own choices”. Within 18 months we were back to the old ways. Our family was almost destroyed as no one was listening to us. Ruth eventually got to 36 stone and was threatened with a formal admission. At this time I negotiated with the hospital and she returned as a voluntary patient. Ten months later and 12 stone lighter, thanks to the wonderful hospital staff, she moved to a residential facility near to us where she remains.

There are good days and bad but mainly good. Ruth has a beautiful room with a view of the sea. She has always loved boats. When asked about the time in hospital Ruth says there were good times and bad, ‘the staff treated me fairly and listened to me’. I say without the hospital she wouldn’t be here, and our family would have been devastated.

Ruth and Theresa now do training sessions for social workers to remind them that behind every “case” is a family with a story.

We have asked each contributor to provide a photo if possible, but Theresa and Ruth couldn’t get a photo they both liked so they asked me to find a picture of a dog:

Ruth loves dogs. I have told her all about the campaign and she is thrilled to be part of it and hopes our story helps others.

So with thanks to Ruth and Theresa for sharing their experience, we end this post with Chunky Stan, LB’s family dog who you can read more about their relationship here.

ChunkyStan