It’s been 10 days since the Rightful Lives exhibition opened and I’ve been reflecting a lot on the responses to the exhibition and whether I’m being ridiculously foolish in hoping it can have any impact. We know what we were trying to achieve by stressing the “Human” and “Rights” theme of the exhibition but does it actually change anything? We’ve tried from the start to not make any grand claims about the exhibition and have genuinely seen it as “doing our bit”. But there’s a part of me that feels that for all the people doing their bit, our bits are woefully inadequate.
Yesterday the Radio 4 programme, File on 4, ran a piece reviewing the Transforming Care scheme. The programme started with Bethany singing her favourite song to her father down the telephone. It was the Bob Marley song, Three Little Birds. “Don’t worry. About a thing. Because every little things gonna be alright”. Bethany is in a seclusion room in St Andrews. She hasn’t been out of the room for 21 months. The room consists of a bed and a chair and Bethany. She is fed through a hatch. Her father is only allowed to talk to her through the hatch. We don’t know if she washes. She is clinically obese. She has had a biro embedded in her arm for three months and the hospital deem she is too dangerous to have the pen removed. Someone is paying £12k per week for this assessment and treatment.
The BBC published an article on their website to accompany the programme:
The opening sentence that the use of restraint in assessment and treatment units has shot up by 50% in the past year. I’ve seen 100s of retweets of the article and the two most common adjectives used to describe this new statistic have been “unfortunate” and “disappointing”. The usual suspects have been crying their usual cry – “This must stop”.
I’ll tell you what’s got to fucking stop.
We’ve got to stop being so fucking reasonable. It’s “unfortunate” that I’ve run out of Frosties for my breakfast. It’s “disappointing” that I’ve got to go into Uxbridge later because the cash point is out of order. We’ve got to stop mincing words. What is happening to Bethany and 1000s of others is violence. Prone restraint is an assault. The “treatment” is abuse.
Imagine if Bethany was a dog. Or a horse. Trapped in a cage 24/7 for near on two years. With a dangerous object stuck in their paw. There would be petitions all over social media. The animal’s plight would be the lead story on the national news, not stuck away in the evening on Radio 4. Paul O’Grady/Joanna Lumley/ John Nettles would be fronting a national appeal. We often say that learning disabled people are seen as “not quite human”. Perhaps it’s worse. Perhaps it’s “less than animal”.
Sorry to end this blog on a personal note. My heart went out to Bethany’s dad. I recognised myself in him. He was so bloody reasonable. Since the tumour was diagnosed in my bladder I’ve had lots of dreams and have been doing lots of meditation. One thing that keeps coming up is it’s my tumour of shame. The shame of Steven gripping onto me as visiting time came to an end and ripping my coat and how I didn’t look back as three members of staff descended on him. The shame that I left as I was asked the day another resident was smashing the place up, leaving Steven to be possibly smashed up too. The shame that I bit my tongue so often. The shame that I couldn’t be as honest as my son.
I’m having the tumour removed tomorrow. I’ve got absolutely no idea what it will take to remove the tumour of such appalling violence towards learning disabled people.