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The Wrong Trousers

October 1, 2014

I was feeling quite perky this morning. The roof is mended. The flat purchase is coming along nicely. I spoke to a solicitor about the respite issue. I’ve read the first draft of the LBBill and it’s stonking. And Steven had discovered an old album by The Tymes and was playing Interloop on a loop whilst he learned the words.

And then I read Cath Dyer’s latest update on Claire’s awful experience in the hospital in Brighton. Through a combination of total boredom and fear that she’s going to miss her mother’s birthday, a trip to see the Lion King and Christmas, Claire had a meltdown yesterday. Once again proving their (non) autism credentials, the hospital’s response was to cancel her 4 hour time out of the hospital with her grandparents today and replace it with 2 hours visiting time inside the hospital compound.

They just don’t get it. And I get the feeling they’re not the slightest bit interested in Claire or her family either. Processes and bureaucratic rules come before being interested in, and getting to understand a human being. A human being who has autism.

Whilst I was thinking about this, I went downstairs and Steven was watching Mr Bean. It was the scene where Bean changes after judo and puts the wrong trousers on. This triggered a memory for Steven:

“Mr Bean’s got the wrong trousers on. Like Steven Neary at M House”.

Steven came for a home visit one day in a tracksuit that belonged to another resident. It was at least 3 sizes too small and he was clearly in discomfort. He looked ridiculous. Like Max Wall. This happened a lot. I emailed the professionals but it just prompted the infamous ” there’s always something or other with Mr Neary” reply. Nobody was interested in Steven’s comfort or dignity.

On the day Steven was released, he arrived home with a black bin liner (goodness knows what happened to the holdall he went away with). I’m not exaggerating when I say that 50% of the clothes in the binbag weren’t Stevens. And lots of his own clothes weren’t there. One of his support workers dropped the erroneous clothes back at the Unit but we never got Steven’s clothes back.

When someone is seen as not quite human, these things don’t matter. Whether it be punishing them by preventing them from doing the most important things in their lives, or dressing them like a music hall act, it doesn’t matter.

Nobody is interested. Nobody cares.

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From → Social Care

13 Comments
  1. Auti Boy permalink

    You clearly care and writing about the eternal care/commerce/crap ratio can only be a good thing. Well done. I care too, by the way, and have paid some price for doing so but that won’t stop me. All the best. Ric

  2. twittleyjules permalink

    It sounds so horribly familiar to me. Cancelled leave for all the wrong reasons, wrong clothes, dirty clothes, lost possessions, not washed or shaved, not meaningfully occupied. I could go on and on and on but it’s too depressing. No care and no caring. And it costs a fortune.

  3. Bin bags are standard for people coming out of institutions. They don’t have suitcases. It’s the thing that has stayed in my mind and shocked me most. The clothes used to be called ” bundles” you just had to take your bundle and make it fit. Aushwitz worked on the same principle of dehumanisation.
    They are experimenting with Claire and of course her and her families feelings are completely irrelevant.
    Mark I’m glad your flat , the respite, Stephens lovely day and the nice weather made a perky time because you bloody well need it.

  4. James mckay permalink

    Hello, i am an ld nurse who used to work in an ” assessment and treatment unit ” i wont get onto that but just reading your post made me remember the time i tried to get staff to bring in any suitcases holdalls rucksacks etc so that when a patient was discharged they could use the bags to move to there next accommodation/ home instead of just stuffing all there worldly goods into a clear bin bag. I once shed a tear when i saw that a patients photos of deseased parents were all scrumpled up in the same bag with cassettes toiletries etc. I have been a follower of your blog for a while now and feel that if the powers that be could just take a common sense approach to care surely things could improve. The constant rebranding of care with fancy titles and objectives as you rightly say is nonsense.

  5. Emily permalink

    Mark, you really care. I really care and a vast majority of people care and see the madness of the system. I care about and love my son Max and will continue to be his voice until he is heard.

    • Weary Mother permalink

      Emily
      Me too.

      I have fought so very hard against increasingly dangerously low levels of support, and what
      to me has seemed spiteful resistance to my challenging harsh and dangerous cuts in already very poor support. I have commented on this on Marks blog. We recently ‘won’ a grueling meeting with the LA; me fighting on for some health care, money, correspondence support, and for help with the repeated and dangerous crises, for my multiply and learning disabled son. I am old and he lives ‘independently’. We (it has taken years and a lot of disrespect towards my son and me) last year won some support time, for my son to go with a learning disabled friend into wider community once a week. The rest of his life and activities are spent within his learning disabled community, apart from contact with family.

      We have now heard that my son has been agreed some support for his increasingly frequent health appointments bills, correspondence – etc (he is learning disabled, can’t read and barely can walk/see/talk) …….this support time to be taken from his once a week, precious time out in the community with his friend.

  6. Hi Mark,

    Reading this made me think of Mr Rusi Stanev in Stanev v Bulgaria (2012). Mr Stanev was deprived of his liberty in a care home in Bulgaria. In the care home ‘He had only a bedside table in which to store his clothes, but he preferred to keep them in his bed at night for fear that they might be stolen and replaced with old clothes. The home’s residents did not have their own items of clothing because clothes were not returned to the same people after being washed.’

    The European Court considered whether the conditions he had been detained in amounted to ‘inhuman and degrading treatment’ under Article 3 of the ECHR. This is a really high threshold – it’s very rare for the ECtHR to make such a finding, especially where ‘professionals’ are involved. Yet in this case, they did find it violated Article 3. In part this was because of the ‘execrable conditions’, poor food, cold in winter etc. But it was also because ‘ the home did not return clothes to the same people after they were washed (see paragraph 21 above), which was likely to arouse a feeling of inferiority in the residents.’ In other words, this ‘wrong trousers’ treatment, because of what it symbolises and the feeling of inferiority it arouses, can contribute towards one of the most fundamental human rights violations.

    The case is here if you want to read it:
    http://www.bailii.org/eu/cases/ECHR/2012/46.html

    L

  7. Many years ago I worked in a day centre and a young man with autism arrived at the centre from a respite unit that was in a hospital. It had a terrible reputation and the young man was distressed and dishevelled when he arrived wearing clothes that were not his own. When I was assisting him with personal care I discovered they had put female pants on him. I was so saddened by the treatment people received at this place and have never forgotten it. Fast forward 25 years and I worry so much about my own autistic son and what the future may hold. The recent talk about ditching the ECHR terrifies me and living in Scotland and missing the chance to escape the desperate welfare provision imposed by the Tories at the recent referendum has left me so terribly sad for my son and others like him. Keep up the good work Mark!

  8. meg permalink

    Yes we do. I am appalled at the actions and attitudes of staff at this place in Brighton. I live and work in Brighton. Which hospital?

    • Meg: it’s a private medium-secure unit outside Burgess Hill (it’s been mentioned in the papers already, but the family don’t want the name of the unit broadcast as it could harm their already fragile relations with the management there). I spoke to a mental health outreach worker in Worthing and she said that they do not use this unit if they can possibly avoid it, as it’s expensive and they are aware of safeguarding issues. They actually let Claire home from Monday to Wednesday this week, for her mother’s birthday which they had made them aware was an enormous source of distress to Claire to miss. She went home accompanied only by her mother and sister and came back with her grandparents, both in their 70s, without incident, hardly the sign of someone who needs medium-secure accommodation.

      • meg permalink

        No Matthew it does not. I am glad to hear Claire was able to share and enjoy her mum’s birthday.

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