Day 90: Voice and choice #107days

Day 90 was adopted by Eilionoir and colleagues at the Centre for Disability Law & Policy at NUI Galway. This is why they offered to support #107days and #JusticeforLB:

This day of action is adopted by the Centre for Disability Law & Policy at the National University of Ireland Galway,as part of our 6th International Disability Law Summer School. We wanted to dedicate a day of our summer school to LB, because this year’s summer school is about ‘Access to Justice and Political Participation’ for people with disabilities.

The goal of the summer school is to work together in practical ways, through activism, litigation and alliance building in civil society to achieve meaningful legal and political change all around the world. Our summer school brings together a diverse group of teachers and students, including actors, activists, people with disabilities and their families, journalists, government officials, lawyers, policy-makers, and researchers.

The week long summer school started yesterday and this is what is happening today:

On our day of action we are focusing on the theme of ‘voice and choice’ and will have presentations on the topics of legal capacity and independent living from our international faculty members, including discussions about reform in Iceland, India, Kenya, Ireland, the UK, Hungary and Australia.

At the end of our day’s discussion, there will be a performance from an inclusive theatre company of people with learning disabilities called Blue Teapot. This performance will present a scene from the play ‘Sanctuary’ which is about relationships and love.

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The Blue Teapot actors last week, together with members of the Inclusive Research Network, Connect People Network, and National Platform of Self Advocates of Ireland, helped to launch a private members bill sponsored by Senator Katherine Zappone as part of the ‘right to love’ campaign.

Just before Blue Teapot’s performance we will show a Youtube video to celebrate Connor’s life, and Blue Teapot are dedicating their performance to Connor’s memory.

We are very grateful to the organisers, the Blue Teapot actors, the participants and attendees at the Summer School for taking the time to learn about LB, and we hope that they will continue to spread the word about #JusticeforLB when they return home. You can read more about the Summer School in the links above or here, and you can hear more from the Blue Teapot company discussing their play Sanctuary below:

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.