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Unfortunate Violence

October 3, 2018

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:

https://www.bbc.com/news/amp/uk-45652339?__twitter_impression=true

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.

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9 Comments
  1. Pauline Thomas permalink

    The plight of Bethany is the stuff of nightmares. What on earth are these so called carers doing? Where is her human rights in all this? Surely someone with a just a tiny bit of compassion in them could get the biro removed from her arm. She must be in terrible pain. She must be lonely and distressed too. Surely solitary confinement is damaging her mentality? This is not a cure.

    Unfortunately the money grabbing people running these places have no shame or humanity or compassion. They just have the ear of the politicians running this country.

    I can commiserate with you when you say how you feel about being ashamed of letting things go when Steven was in crisis. I too have memories of shame when I think of all the things I let go when I could have been fighting my son’s corner.

    Like you said Mark animals have more rights than humans. A friend urges me to put my son into care (he will be one day) but refuses to let her two cats go into a cattery so she can take a much needed holiday because they will fret!

    Wishing you well for tomorrow.

  2. Elizabeth permalink

    It’s simply inhumane. As a parent of a 15yr autistic boy this scenario is my biggest worry. I am almost as afraid to ask for help as i am to not ask for it. At every turn the professionals we have encountered over the years have failed to really put the individual first. It is always about £££ and stats.
    Thank you for all you do to highlight these terrible situations and the lack of planning and care in the systems we are forced to navigate.
    And best wishes for tomorrow and a full recovery.

  3. Diana Foulkes permalink

    You are right it’s a dam disgrace and yes we do need to stop being reasonable.

  4. FF2016 permalink

    Yes, it is all about language that waters down atrocities, makes atrocities acceptable, as long as they happen to others.
    Yes, most people are busy watching soaps or listening to Brexit articles, but where are all the psychologists and psychiatrists, as they should have been in the documentary explaining why any patient is secluded all day and night doing nothing?
    Is there any research paper looking at this ‘treatment’? Any peer-reviewed research on seclusion rooms?

    Come on, BBC. Why didn’t you catch the experts and demand to know how £12K a week in a seclusion room is good for health.

    I see these experts at conferences, and it’s obvious they rarely actually do any work. They’re always out, but leaving patients in cells? You couldn’t get a bigger power imbalance.

    Should we report psychiatrists who seem to be at conferences all the time? We need to stop being dangerously nice and allowing the game to be played. They are just ordinary people, just needing to be exposed, just like Shipman.

  5. I am so sad to here this has happened I did not see it but just hearing this story, that society and those that are ment to protect life nuture and treat with dignity becoming a huge problem .
    With so many cases of poor quality care and little understanding how can one become undamaged by that .😫😫

  6. Yet again, you’re spot on. This sanitisation of the shite, the normalising of the not-normal, the dehumanisation because of ‘risk’. Argh and Urgh.

    But its your phrase of ‘A tumour of shame’ that has touched me this morning and will stay with me. What an incredibly powerful thing to say. If I’m being honest I know I carry shame, guilt, impotence with me through life – I reckon I’m not the only one. Welcome to parenthood where no matter what we do, we feel we are never enough. But I don’t think that’s the truth. No. I think we make the best decisions we can at the time. Forgiving ourselves is critical to releasing these feelings, which are as you say, cancerous. And don’t forget, you’re in good company; even Ghandi, the Buddha, Luther King, Mother Theresa et al didn’t get it right, didn’t speak up, couldn’t solve everything all the binkin time.

    I hope when you reflect on those times you see what we all see – a brave brave dad standing up for his son oozing oodles of love. And in all of the shit times, Stephen will never not have felt that.

  7. kate permalink

    last night i tried twice to add a response but managed to lose both of them! so all i will say is thank you mark for continually raising awareness of what violence and hate is going on. but i won’t try to rewrite what i said as really there are no words….

  8. Reblogged this on A Blog of Experience and commented:
    You’re absolutely right Mark…We have to stop being so reasonable with these abusers!

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