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November 10, 2016

I remember moving into my first flat at 20. One of the real joys was putting my own stamp on the place. Mark making his mark. Like all teenagers, my bedroom at my parent’s house was the space to express me but a whole flat was a much bigger space to fill.

I’ve had this very much in mind over the past few weeks during the move to Steven’s new house. I saw as my main task, how to help him create his own space.

Alongside the move, I’m aware that I’ve become obsessive about living as “normal” a life as possible. This puts me on a collision course with two of the themes I write about a lot – how (useful) services don’t exist anymore and how the social care system likes to frame the life of a learning disabled system. The latter theme covers a wide ground from the strange, othering language to the many stifling, life draining systems and concepts that are forced into the person as their narrative.

“You’ll have to update his person centred plan to include visits to his aunt and uncle”.

” He hasn’t got a person centred plan”.

“Er… How does that work then? Without a plan?”

“Er…Steven just says he wants to take some cake over to Auntie Jayne’s”

Yesterday, as I went from room to room in Steven’s house, I felt a sense of relief that his home doesn’t show the signs of being in the system. There are no lever arch folders of daily logs cluttering up the dining table. The four folders of (2010) risk assessments are now in a box, in the garage, at my flat. On the wall is his poster of Shadow and Nightshade, rather than a timetable of “community activities”. The DVD player doesn’t have a clip art symbol of a DVD on it anymore – Steven knows it’s a DVD player. We no longer have a huge folder of laminated pictures of all Steven’s favourite videos that the ATU felt would help Steven plan his viewing. Now, if he wants to watch The Adventures of Priscilla, he just takes the DVD off the shelf and puts it on. The support workers have been working with Steven for so long now they know that Friday night is pepperoni pizza night. We don’t need a menu chart on the kitchen wall. In the hall, there is a small sideboard and this is home to all things Personal Budget. But the tax tables, time sheets, bank statements, audit forms, receipts etc etc etc are inside the sideboard. On top of the sideboard is a magnificent display of support workers’ hats.

It’s working with the language too. On Mondays, I no longer go off for respite – I go to my flat. We wouldn’t dream of using the phrase ” circle of support” when talking about Uncle Wayne popping in. We talk about Uncle Wayne popping in. Steven talks about his friends, not stakeholders. Steven isn’t “supported with his personal care” – he has a shower. I could go on for hours (and I probably will) but I can’t describe how liberating this feels.

For years, since adult services got involved, I’ve always been very uncomfortable about going into other peoples’ homes. I always came away depressed because their living rooms didn’t reveal signs of being in the system. All our rooms carried the mark of “service user”. We were different from other people.

Not displaying the markers of being in service land makes service land very uncomfortable. A one page profile hanging above the stereo makes service land feel like it’s contributing something valuable. A gap where the profile once hung exposes the gap in the service land’s view of how a person should live their life and the reality.  It markedly states, you’re not really needed here. We can get along okay without you.

Isn’t that what anyone would want?


Living room 5


From → Social Care

  1. Jayne knight permalink

    Awwww it’s lovely Mark xxx
    At least you won’t have a service land tree at Christmas and presents people buy for themselves with their own money and people wrap up
    Yes really sob sob xx

  2. Eve smith permalink

    Absolutely Mark, I couldn’t have put it better…but needed you to point out this as we are all in this awful circle of a service user, and can’t see the woods for the trees…

  3. johnpopham permalink

    You missed the cardboard figure of the Director of Adult Social Services in the corner 😉

  4. CATHY Hodge permalink

    Its all about controll, and boy do they want control,
    But at the end of the day, thats not in Stevens best interests.
    And I bet that has them spinning in circles, of meetings about meetings.
    They wonder how you removed the shackles, and if more will follow your lead.

  5. Worse still, you (any adult with learning disabilities), could be moved at any time, to another service, as you are a valuable commodity.

  6. Reblogged this on rosemarytrustam and commented:
    Thank goodness! What has happened to people’s lives that there’s developed all this jargon.It defies all reason as to why we don’t have the same features in our lives as the rest of us. Yes – that’s not to deny extra help some people’s communication needs may need but why do we not find ways for this to be as usual as possible. I have address books and calendars, diaries and even a file with my household bills etc in – but they wouldn’t be out on display either. PLEASE please can all services not think a lot harder about how they do support people’s lives! This is a good example…..

  7. I think one of your biggest achievements for all of us is defining distancing language and othering.
    Imagine doing that to an ethnic minority (I am from an ethnic minority by the way).

  8. Mark, I cried and laughed in equal measure reading this. I love it. We get so used to using the jargon and accepting the everyday different aspects of this community that we often tend to forget how far from the norm they are. Thanks so much for writing this, I needed the reminder. PS I love Mr Bean and Pepperoni Pizza so Friday night at Steven’s pad sounds like bliss to me

  9. Gill permalink

    I always thought of ‘authority’ visits as being like a dog that lifts it’s leg on every tree, wall and bush. It doesn’t want to relieve itself, it is just leaving it’s mark, almost ownership of the 3rd party and their home, may god help the person who tries to scrub off the scent. Well done to you both, i think you have used the full strength Jeyes Fluid to rid the place of scent markers.

  10. weary mother permalink

    …….’distancing language and othering’…4 perfect ..perfect.. perfect …perfect words. Says it. Spot on.

    I have struggled for years to sythesize ..our long painful experience of same… into words..

    I have just kept returning to my best definition …of…. ‘is a bit like the Moonies’.

  11. Pauline Thomas permalink

    Risk assessments (sigh).

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