Sam Sly considers two contrasting stories of young people with learning disabilities in institutions with a label of challenging behaviour:
A beautiful, vibrant, loving, caring young woman celebrates her 30th birthday soon. To give you an example of her thoughtfulness, on Christmas Day morning she took time out to phone me and wish me a Merry Christmas and to tell me I’d been missed as I had been away from work for a few months. She is a true gem.
She has said I can share her party plans with you. She has been making them for months and sent invites out in September because she is so excited about it, and has never celebrated a ‘big’ birthday before in her own home. She’s done detailed planning and some sharp negotiations around the costs to ensure it is affordable. This woman knows how to strike a deal!
Fourteen people have been invited – family, friends and some people that help her day-to-day. They will start off at her house with hair and make-up, a few drinks, music, laughter and some girly fun. Then a limo is taking everyone to a slap-up Chinese meal in town followed by karaoke and a VIP area at a local club to end the evening with some dancing. What a night!
What a way to celebrate and I am glad I will be there with her to see her smile.
The thing is, she is worth it and has been through some very tough times. She is brave and resilient and at long last is living a life – still with all its ups and downs – that makes her happy the majority of the time, as life does for most of us. That’s real life!
This young woman has some major health problems, which she hates, but puts up with having to spend lots of her precious time in a general hospital and at medical appointments. She has epilepsy, and, coupled with a learning disability and an unjust label of challenging behaviour, this young woman had to spend her 16th, 18th and 21st birthdays in institutions, including specialist hospitals, away from home.
Just before Christmas I was off work after an operation and found myself spending more time on Twitter. I came across a story with similarities to our party girl but a very different ending. Although ‘story’ does not give justice to the travesty that happened to this young man lovingly nicknamed by his family LB – ‘Laughing Boy’ – whose Mum writes witty blogs about, and whose obvious love for him shines through every word.
LB also had epilepsy, a learning disability and was given a label of challenging behaviour. He was sent to a specialist hospital away from home where he died in July last year at about the time our party girl started planning her birthday.
His family, obviously devastated, became more so when it emerged a few months later that the hospital he was in did not, when inspected by the Care Quality Commission, meet any of the essential standards of quality and safety required.
Of the investigation, responsibility, culpability etc I do not, nor profess to have any knowledge about. But what affects me most, and makes me saddest, is that our party girl and LB were turned by professionals, whose job supposedly involves caring, from the people described by those who love and care about them as; ‘hilarious, remarkable, generous, loving, talented and exceptional dude who loves Eddie Stobart, drum and base and going to London’ (LB) and; ‘loving, funny, witty, caring, sociable, gentle, beautiful, and resilient’ (party girl) into medical and behavioural non-humans. Their gifts and skills were ignored and from that point bad things happened.
It doesn’t have to be this way. When we at Beyond Limits first meet someone we are planning with to move out of a specialist hospital we have what we call a service design day. It is a positive day, all about the person and their hopes, dreams, skills, gifts and talents and the person invites those people that love, care and want the best for them along. These days are incredibly powerful and they enable us to design a service for someone that has foundations firmly cemented in the positives, not the deficits.
I categorically believe that this is the only way to plan and get things right for someone. It is only on these foundations that any lasting service can be developed for people who have been so systematically de-valued and de-personalised by what we have done to them in our horrid systems.
This column is dedicated to our party girl – hope you have an amazing birthday – and to LB and his family and their fight for justice. Good luck and the world are behind you.
This article first appears as the ‘independent thinking’ column in the March/April 2014 issue of Learning Disability Today. For more information on the magazine, and details of how to subscribe, click here [http://www.learningdisabilitytoday.co.uk/learning-disability-today/]
About the author
Sam Sly is a freelance consultant and director of Beyond Limits: www.beyondlimits-uk.org. She has worked as a social worker, an inspector as part of the Change Team following the investigation into Cornwall NHS Partnership Trust, managed the campus closure in Bournemouth and had a senior position in a large domiciliary care agency before doing consultancy work. Email: email@example.com