Johnny Rotten and the legitimacy of anger

Rich met me at the bus stop after work yesterday. I was feeling a bit low. We wandered home across the London Road.

“You seem a bit despondent…”
“Yeah. I am. Fed up with raging. And the continued shite that just doesn’t change. Not sure I can bear another year of being so angry... I’m weary of being constantly angry.”
“That’s what happens.”
“What?”
“People get worn out. They stop being angry. But it’s right to be angry. Anger drives a refusal to accept the low bar, the unacceptable. It drives action and critical engagement. Without it, issues are reduced to vague problems too easily dismissed.”
“Hmm…”
“Like Johnny Rotten said, anger is an energy…”

Minutes after getting in, an old mate turned unexpectedly. Her son a year or so older than LB. We had a catch up over mugs of tea and a chunk of Christmas cake. She filled me in on the horror that has been her family’s recent experiences of adult services. Not a pretty story. But it so rarely is. We reflected on the way in which 18+ years of loving and bringing up our kids (along with their sisters/brothers) can be summarily dismissed or problematised by health and social care (with the eye watering irony they offer nothing in its place). The misuse of power and erasure of love and more (the right words don’t exist) too often, just extraordinary.

Before she left, she said;

Do you remember when N and LB were young? And we were so optimistic about the future…

Blimey. I’d forgotten. We were. There was a group of us parents. A right old bunch of budding agitators/activists [just mums really…] All with kids the same sort of age. So utterly convinced we could change what we thought was an already changing world to create rightful space for our kids. To live the lives other people lived. I was shocked to remember this, and that I’d forgotten.

Later, one of LB’s school mates posted two photos on Facebook from years ago. LB was sitting among the small group of kids. He looked so chilled in one and smiling, as he saw the camera, in the other. It was clearly before the fake, fixed cheesy Wallace grin period which lasted a good year or so. Until my relentless photo taking became commonplace again.

Rich is right. Anger is necessary. Or you get sucked into the malaise that is the myriad words/excuses/bullshit/reviews and recommendations that health and social care bods endlessly come up with. Non existent change… what’s about to happen. And never does. At best, a kind of hope soup. That never leaves the kitchen. And feeds no one but the cook.

So 2017. Another year. With anger. And focus on brilliance. The remarkable. And humour. That rightful space is still there, somewhere. We just have to collectively, and persistently, nudge the crap out of the way. And never stop saying this is simply unacceptable.

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Bindman’s published their first ever annual review today.

20 thoughts on “Johnny Rotten and the legitimacy of anger

  1. Thanks for that Sara. So easy for me to slip into despondency after being angry for so long. A timely reminder to get with the programme and stay focussed on what I’m doing and who I’m doing it for, even if it is too late for him as a breathing, living human being. There are too many of us. Those I’ve met since with the exact same experience who are as tortured as I am by their pointless loss are as angry. It’s absolutely right to stay angry. Anger because we trusted our loved ones to be cared for and looked after, as we would look after them, but they simply didn’t care enough to do that.

  2. My first memory of meeting you I was so impressed by your positive optimistic view for the future just before we joined PAG (15 years ago?)to try and improve supports for families, we carried out a local survey my memory is there were so many traumatised families due to daily battles,reviews ,assessments and little practical support and no respite, looking back now the tip of the iceberg.

  3. Sara this is one of the best blogs you have written. Yes, anger – pure, unsullied anger. Dont ever let the bastards get us down

  4. Pingback: Johnny Rotten and the legitimacy of anger — mydaftlife | danutag57

  5. Hi Shirley

    I found the word,

    just a minute ago.. I found the word.that I was looking for.yesterday when the word ‘hate’ did not seem to fit.. ( have flu and a head full of glass)…

    The behaviour we experience,

    from these people of no conscience or integrity .., who neglect and then so very carelessly hurt – and worse -.our sons and daughters and deem them unworthy of justice ……,

    is contempt.xx

  6. The ultimate tragedy is when anger turns into despair and impotence. Anger is much much better. Anger is the force that drives you. Keep the anger Sara

  7. Try being angry at service abuse and failure if you’re a mental health patient – it’ll be part of your ‘mental illness’, ‘inappropriate’ and if your complaints are serious enough evidence that you’re ‘dangerous’….

  8. We must stay angry – and we must be angry for our sons and daughters.

    For away from their family – they learn very quickly that they are to be totally denied anger (no matter the provocation or the many disrespects ) or any other emotion other than smiley ‘am happy, cheerful and so very grateful…boss’….or they end up sanctioned, modified and drugged

    • You’ve described expectations succinctly and perfectly. As I’ve observed, anything recorded other than being ‘in good humour’ was regarded as a form of deviant behaviour. Very poor or non existent recognition of pain, frustration and anxiety, utter boredom or a desperate need to have space, get outside and get away and breath fresh air and DO something. Simply, deviant and challenging behaviour; ‘Behaviour which challenges the service.’

      • Where have psychologists who talk about mental wellbeing disappeared to? Do they do not help either? Is everybody in on the game?
        What about cognitive needs, exercise, family life, rewards?
        This ‘happy’ state is forced onto people, by constantly saying ‘happy’ as if one word is all the vocabulary needed. I see this all the time, too.
        Are we all in this nightmare?
        How could ‘happy’ just become the word for everything?
        I think we have the most hideous care system for those who can’t speak, and those who can speak have a marginally better experience.
        The system makes even those who can speak (families) speechless. Is this the biggest con? I’ve seen speech therapists do no speech therapy for years, OTs find no activity for years, and psychologists disappear when you need them.

  9. Yes this is the biggest con of the century. Yes we are all in this nightmare. But at least now for the first time (and through Sara’s blogs) it is out in the open.

    • Yes. And Mark’s blogs.
      I think we should have Facebooks with our children’s efforts to survive recorded for statutory services to see – though privacy is a huge cost.
      It has taken a person whose child hasn’t survived all this, to be the biggest voice.

      Good professionals exist, but I just wanted to say how therapists don’t seem to carry out their roles and no one asks them what they in fact do.. It isn’t acceptable to keep seeing this.
      Let’s start 2017 with truth.

  10. Pingback: Of rage and light… | mydaftlife

  11. Having been on a diet of “hope soup” for several years, I find myself weakened, weary, listless. Where in the past and for many years, I raged against the hopelessness/waffle/lack of services I no longer have the physical nor mental energy required for the fight. I’ve no faith in the endless meetings, reviews of meetings, calendar dates for referrals to services which take so long to happen, I forget what the purpose of the referral was in the first place.

    My son is 16. Diagnosed with ASD aged 4. I was told endlessly that he “wasn’t that bad”. Was “high functioning”, didn’t need a Statement nor special school. Turns out, he WAS “that bad” or rather, very considerably affected by classic autism. Everything I predicted for him has come about. He has co-morbid OCD (diagnosed aged 9) and having been punished further by hideous medication which has done nothing, I am now being told he may need to be hospitalised some 180 miles away. NO!!! Over my dead body…and his too, if need be.

    Sara, thank you for writing so vividly about your son in (often ripe) language which reflects the pain. It breaks my toughened old heart to read your posts. Personally, if I have to sit through one more CAF meeting or EHCP review watching people smile and nod and placate and talk utter nonsense and then set a review date to do it all again six months later, I will lose the will to carry on. And I, we all, must to carry on. There’s no other bloody alternative.

    Thank you Sara.

  12. Wendy C I have been there too. My son’s needs so different from yours but I have still trod the never ending paths of meetings reviews, carers forums and the like and reached the despair that you speak of.

    It is a shame that many professionals learn only the rigid rules that keep a person with LD at arm’s length and never (in some cases),getting to know the person. For them It is like learning the highway code but never taking driving lessons. For them it is reading the Care Act but never implementing it.

  13. “People get worn out. They stop being angry. But it’s right to be angry. Anger drives a refusal to accept the low bar, the unacceptable. It drives action and critical engagement. Without it, issues are reduced to vague problems too easily dismissed.”

    Hope soup never leaves the kitchen and feeds no one but the cook.

    Inspirational, thank you Sara. You’ve nailed it again

  14. Another possible course of action is to channel the anger energy into action – to take control away from the (shite) services and harness it yourselves……setting up your own provision. In doing so, you have control over the culture of the working environment, the conditions of service etc as well as the provision itself. Me n hubby have done it with a school for children with autism. We are now moving into post-16 provision and will eventually set up some kind of adult semi-independent employment and housing combo. My son is always going to need support but over my dead body is he going to be using any of the shite that’s currently out there. There are enough clever, resourceful people with lots of fantastic connections and networks amongst you who could pull it off.

    Sharing that as another way of looking at things…………

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