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Bouncers & Floaters

January 4, 2017

Just before Christmas, someone sent me a link to a Facebook group about Deprivation of Liberty Safeguards and said, “You should join this group Mark. Think you could contribute a lot”. I clicked on the link but it was a closed group, so I pinged off a member request.

A couple of days ago I got a reply. It praised my contribution to the DoLs debate but refused my application as it was a professionals only group. In fairness, when I clicked back on the original link it did say this in the group description but I missed it first time around.

I’m not sure why it has pissed me off so much. I totally see the point of professionals, from whatever field, having their own group. If I had, say, a dicky bladder and I came across a group for surgeons who operate on dicky bladders, would I expect to join? Probably not. So, why should this be different?

I think partly it’s because it touches those scars from 2010 and all those dozens of professionals meetings that were held without me or Steven and where such calamitous decisions were made. The message from the whole year was “we know better”.

I’ve had a thing about bouncers since my late teens/early twenties. I was a very well turned out Mod. I had a two tone suit for each day of the week. But me and my mates were often stopped from going into pubs and clubs. The body searches took longer as the bouncers looked for weapons and/or drugs. This latest rejection feels like they took one look at my suit and turned me away.

The other thing triggered by not being allowed in the group is that perrenial question; can you effect change from the outside or do you have to be on the inside? When I’m invited to give a talk, I’m very much on the outside. I’m a “turn” who is wheeled out with an interesting, entertaining story and it’s a story that makes people feel better about themselves because “such a thing could never happen here”. Excuse my cynism, but this reinforces that thought which is always in the back of my head.

I mishievously posted on Twitter what had happened. I got a lot of supportive responses. Some people from within the FB group gave what felt to me rather patronising replies about “admiring your input”. Someone accused me of drawing them into a drama triangle, which was interesting. I wasn’t positioning myself as the victim . I don’t like that stuff. But he/she saw me as the victim turned aggressor and wanted to claim the victim position for herself. All over a bloody DoLs Facebook group.

Ironically, yesterday I went to the Eye hospital to be told that I’ve got permanent floaters. It’s inconvenient more than anything. These strange cobwebs that suddenly obscure my vision. The consultant said, “Your brain will get used to them. They’re your mates for life”.

My vision about “knowing my place” is obscured and probably will be all my life. I definitely have no desire to be on the “inside”. But this was about another experience of insiders deciding my place is on the outside. And inviting me for a brief visit inside to suit them.

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14 Comments
  1. Excellent post, thank you.

    Exclusion is exclusion is exclusion… always uneasy with ‘professionals only’ groups, but I do remember how many professionals were keen to shoulder their way into, or otherwise influence, ‘user’ or ‘parent’ or ‘survivor’ groups… Geraint Ephraim used to note without a conversation there is a battle for control, and where there’s a battle for control, we often find challenging behaviours, or as he usede to prefer to call it, ‘exotic communication’.

    • It’s interesting because we’ve just had the reverse on the 7 Days of Action group. One of the professionals involved in the multi disciplinary team of one of the 7 dudes joined the group. It left the dude’s family feeling watched and very uneasy. It did lead us to question the motives of why she would want to be in the group.

  2. GreatBritain? permalink

    Happy New year to you and Stephen,! and thanks for all your posts, the stories are scarily familiar and i have huge respect for you being able to put them into words..and humor….its good to know there are other folk out there going through the same daily grind…sometimes i feel like an alien, my friends are supportive ..and say stuff like ” i don’t know how you cope ” or “I’m amazed you’re still laughing ” ( its hysteria!), but really they don’t understand, and when another cut to services comes along and i have to start another bloody battle with my local authorities, my ‘understanding’ mates start, with the funny looks ( here she goes again) and offers of nights out to take my mind off things, which really only makes things worse because i cant get out, my son needs 24 hour care and unless its me at home with him the ratio is 2:1 ( 2 support workers) at respite center, which the local authority will only provide once a month. I hate sympathy,( or talking negatively about my son, he cant help it), so i lie and say i just don’t want to go out….and the understanding friends sigh and drift off to go shopping or get their nails done…If only the professionals motives were not all about cost saving and package reducing ( promoting independence) and more about actually supporting families, there would be less time and money wasted in pointless meetings, appeals and letter writing and so more public money available to pay for the services people actually need… but then would the professionals become redundant??

  3. Thoughtful blog post yet again Mark. I raised hackles and caused confusion years ago when as a long term ‘service user’ (how I hate that asinine phrase) I completed a PhD in sociology and started critiquing the whole notion of ‘service user involvement’. At the time it was a real sacred cow and I was frequently confronted by people who did not know about my personal history. I was often put in a corner and forced to reveal it – for example when I was accused of being a ‘naïve academic with no understanding of the complexities of mental health’ or indeed ‘oppressive’. And then people would get very angry with me. (As a ‘service user’ I had watched a grossly abusive mental health service ruthlessly use the whole notion to conceal its wrongdoing, but very few people were discussing this.) It was as if I’d somehow cheated my way into the debate – I wasn’t declaring myself a service user so didn’t ever sit on a board or a committee as the token service user, but as a sociologist I wasn’t allowed to critique the hallowed theory and suggest that it was all going horribly wrong. I am so glad that people are now admitting that the whole service user involvement and patient empowerment thing has not improved patients positions. I think its very difficult to effect change from the outside because one’s opinions are just invalidated by the insiders. But you can’t effect change from the inside either – I have only felt able to freely start blogging about the horrors that happened to me and the abuses that I witnessed once I was no longer affiliated to an institution – everyone used to creep around on egg shells worried about what I might publish. So many people were all so deeply compromised – they were all after funding from the organisations that were concealing the abuses or had students on placement with them or were carrying out joint research projects. Even well-motivated insiders – of which there were many – were terrified and powerless. So the abuse and neglect continued. That’s how it works. So it is important that outsiders tell their stories even if the insiders won’t let them join their Facebook groups…

  4. simone aspis permalink

    Sally do not get me going on the disgraceful abuse that goes on in academic research about people with LDs. I had one academic who proudly said that she and her “partner” with global LDs was doing a PHD together – what a load of b! I am doing a PHD – do it yourself! I had another academic doing research on people with LDs who said he had a group of people with LDs advising him on the social model of disability – I so happened recognised one of the names and asked her what she knew about the social model – absolutely nothing! So many research projects are being sold as working in partnership with people with LDs – absolute nought – I had to resign from referring papers because I was not allowed to check the authensitiy of people with LDs involvement – it was quite clear who was doing what. I also refused to be involved in a woman with LDs book unless I was there undertaking the discourse analysis – did not want a non disabled woman to impose her discourse onto my experience of my life as a disabled woman. Ywan Ywan – got to get back to doing some PHD work!!

    • Hi Simone
      Just to clarify, my post wasn’t regarding people with LDs, but with mental health problems. I’ve taken to joining in the debates on blogs like Mark’s and Sara (Ryan’s) because I can see similar issues emerging and there’s a very lively debate going on with some very frank discussion regarding just how ’empowered’ and ‘involved’ the ‘service users’ are. What I have seen from ‘service user research/involvement’ in mental health is academics getting chairs and research grants on the basis of their service user involvement and the service users frequently not even getting their names on a publication. It made me deeply cynical, particularly when I sat through one meeting listening to a local psychiatrist whom I knew to be a highly abusive practitioner banging on about how committed he was to ‘service user research’ whilst at the same time behaving in a very aggressive way towards me, a real bloody service user who had suffered at the hands of people he was actively friendly with! My cynicism regarding the whole travesty by people who didn’t know me was always interpreted as me ‘not understanding service user involvement’ and being a snotty academic myself…
      Good luck with the PhD – you’ll confuse them all when you’ve got it, particularly if you challenge people from the ‘caring professions’….

  5. Shirley Buckley permalink

    Mark – my experience of professionals and DoLs is that the haven’t even read what DoLs is. This is after 10 years of experience in the Court of Protection. Not once in any hearing has Bournewood or Neary v Neary been quoted as a precedent. I am still fighting for Martin’s right to appeal the Deprivation of Liberty, which is now approaching its fourth year.

    • Shirley apologies if too personal a question , can you clarify why a family member/friend isn’t acting as representative ? why isn’t the one appointed asking for a review ? Is there an avenue for you to offer yourself/family member for the role at this later date ? I am only aware that a person must maintain sufficient contact.I know people who would only have friends to act , no extended family at all on either parents side, the Court of Protection/ future has been a taboo subject to date by choice.

      • Shirley Buckley permalink

        Ha ha bloody ha. Because the judge in the CoP, the Official Solicitor, the LA, and the CCG decided I am not fit to be Martin’s RPR, let alone his mother. A penal notice against me if I influenced him in his decisions. The one appointed hasn’t read the Standard Authorisation of DoLs. Martin’s requests for me to help him have been refused for the last 10 years, under the guise of him lacking capacity. The LA over ruled my EPA illegally 2 years ago, The Court refused to accept I hold all Martin’s medical records, with his permission), and when Martin asked me to be his Deputy for Health and Welfare, Mr Justice Charles refused Martin’s application as having no merit. Martin’s brother’s rights as a family member have been ignored for over two years, and he has never been contacted regarding best interests. Mr Justice Charles judgments are in the public domain. Finola Moss’s blog covers all the legal aspects of this

  6. Frannie permalink

    Another on the nail blog raising issues that so many of us face.Thankyou for your great work .Wishing you Steven and his team all the best for 2017

  7. Karen permalink

    Mark, how did they decide that you aren’t “professional”???

  8. thank you Shirley for the information and guidance. It really does feel appropriate after reading your story to study the legal aspects as you suggest ahead of time .

  9. Shirley Buckley permalink

    If you canpossibly manage without involving the ourt of Protection do so. The Mental Capacity Act is a legal minefield, DoLs not fit for purpose, and no-one knows what to do. The Law Commission has just postponed their review until this spring

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