Wednesday, 28 November 2012

Winterbourne is not the only view

Dumping grounds, abandonment, prisons, and torture cells are all highly emotive words I’ve seen used to describe treatment of learning disabled and elderly people. Those who we are supposed to love but instead who are viewed as an inconvenience to a fabulous life, which could be lived well if it wasn’t for our “irritating relatives.”

Next week the government plans to publish its final response to the Winterbourne View report, which looks into the serious abuse of learning disabled people in that private hospital. Thankfully those who waged a war of terror on the patients within its walls received sentences. They weren’t lengthy or in step with the abuse but they reflect the value society places on those with learning disability.

They’re not valued as actual people they are just someone else’s problem.

I hope they do close every treatment and assessment unit if they are all like Winterbourne View. But I hope more than anything else that The MP’s who gather and frown and make “compassionate faces” give carers and learning disabled people something decent in its place. Good residential provision and local services. Because closing them down and returning learning disabled people to their families isn’t the answer. Not for anyone except budget holders.

The perceived wisdom on caring for people with learning disabilities is that the only and best place is at home; that residential placements are all institutions and that all institutions are Winterbourne View.

Then on with our lives as we sigh and splutter over terrible things done to vulnerable people in secret. Back in our own lives, we see someone being foolish and call them a retard, but that’s ok because it’s only words right and words don’t mean anything that’s why all fascist dictators choose to spread their message through the medium of interpretive dance.

The key in all this is to remember that it’s not so called “challenging behaviour” its actual challenging behaviour. My coccyx and fingers have been broken not “so called broken” but actually broken.

Because that’s what caring for someone with challenging behaviours is like.

Not “so called” like, actually like.

The pressure being heaped on carers is immense and in all the rhetoric flying around about scroungers, and deserving and undeserving people, the rhetoric about abandonment is still being accepted and endorsed.

The pressure on carers to keep caring beyond safety, beyond reason and beyond endurance is huge. Meanwhile disabled children pass into adulthood and their need for protected independence is also being ignored through perpetuating myths that everyone who works with learning disabled people is a potential predator. This notion is as insulting and wrong as it is damaging.

Morality is the key here. It’s making a financial imperative into a moral choice. If the choice is abuse or stay at home which would anyone choose.
Very smart notion that one.

Basically because it’s much, much cheaper to reinforce carer guilt and fear of stranger danger, than it is to provide a good quality residential placement for everyone who needs one. Where’s the bloody profit margin in that eh?

If all placements were local, well maintained well inspected and socially acceptable, then everyone would benefit. Good and bad provision costs exactly the same, but making it an issue of “abandonment” is the real saving because people are emotionally blackmailed into not fighting for it.

My girl has finally found her voice and her life again. She made the transition after an extreme bout of her violence, which frightened her as much as me. She was miserable she wanted friends but friends when you have a learning disability are either few or non-existent.

She gave up respite she gave up school and she gave up hope. Staying at home all day refusing to go out. The rages where violent and terrifying and these challenging behaviours meant that she was miserable and lonely and so were we.
“I could never send my kids away or my mum” is something I’ve heard a great deal.

I did both.

Because I had to. As a sandwich carer my Mum with Alzheimer’s and both girls with Autism had needs, which clashed. Emily couldn’t cope when Grandma regressed to little girl in a woman’s body who held my hand and had to be fed. She looked like grandma and sounded like grandma but she behaved in a new way which is frightening for someone for whom routine and expected outcomes is everything. In the end they couldn’t be in the same room.

I cared for mum for 18 months 3 meals a day and 12 tablets at 12 hourly intervals. Then I brought in a care package. Mum continued at home for 5 years. She began to wander off and the final straw came when she put her electric kettle on the stove and forgot and went out for a walk. Her kitchen was on fire when she finally found her way back. There were fire engines and neighbours and quite a crowd which she fought through, running back inside to find her cat.
Alzheimers took many things from her but not her capacity to love.

The end of Alzheimer’s means two hourly turns through the night of a resistant, locked body, with no speech and recognition. With increasing violence here how safe would anyone have been? If you think that you could do that and manage everything else in your life than I applaud you. You’re obviously a much better person than I am.

So yeah I “abandoned” my mum and now I’ve done it all over again with my daughter.

Her misery and unhappiness is evident, from her thriving at school everyday and her laughter on the phone. She is brutally accessing the community for terrifying things like swimming and the Zoo and youth clubs and her horror further compounded by parties and self-esteem and friends who really value her existence for the first time in her life.

People who judge all residential placements as the same are simply compounding carer neglect. Carers endure isolation, guilt, exhaustion, stress, broken bones, loneliness and discrimination.  Mental illness is routine and breaking point is common when carer burn out is reached and no one listens.  Carers can be as young as 5 or as old as 85 and they all manage exactly the same level of stress and exhaustion.

In the space between experience and supercilious judgment no one can hear you scream.

But keep on judging and assuring everyone that every placement is Winterbourne View, ignore dedicated care workers who work everyday with compassion and integrity as you brand them all “scum”. You keep the narrative going that all parents who choose residential placements are bad parents. That will do the Councils job really well. If society judges all carers as abandoners there will be no need to try and spread already thin budgets even further will there?

Compound carer guilt by reminding them how terrifying the world is because they don’t know that already and need to be told. Make all headlines as sensational as possible and also tuck in lots of stories about carers who refuse to give up. It all helps promote a society where fear and mental breakdown gives us more murder suicides by mothers too broken to go on.

 As carers try and work out a way to manage work and home and sleep deprivation and failing or non-existent services, fracturing marriages, don’t forget to exclude them socially because that’s also really helpful.

We need residential placements but we need local residential placements. We need early intervention and we also need to remember that discrimination and bullying of disabled people and carers begins first in the language and semantics of judgement.

If you place no value of the voice of carers to tell the truth about their lives and experiences, if you rush to silence them because the reality is too expensive or to threatening or too real, then you play a part in reinforcing this failing system of ours.

Not every residential placement is Winterbourne View.

I know this but, as I’m a serial abandoner-carer no one has time to listen because they’re too busy condemning  through ignorance or fear.


  1. Well said. Carers are undervalued almost as much as disabled people themselves. We have had two wonderful respite placements but worry that budget cuts will close them. If there is nothing for my daughter post college I will have to give up my job and care full time for her and become a "scrounger" rather than a tax paying member of society. Where's the logic in that?

  2. Another very powerful post Nicky. Thank you for sharing.

  3. This is completely brilliant, and I say this from family experience. Thank you for writing it.

  4. I thought this was brilliant. My brother had severe physical and learning disabilities and though his early residential experiences were not good in the 1960s, the end of his life in 2007 was in a lovely small, loving local residential unit near my parents, who could never have looked after him at home. It was the best and only way for all of us, and my brother had the specialised, loving care he needed. I recognise, however the shame that a family can feel, even though those judging do not know the circumstances or care about the individuals involved.

    I am now supporting elderly parents, one with dementia, whist trying to juggle home life with 4 teenagers, and I do wonder sometimes if part of my desperation to keep my mum out of eventual residential care at all costs is for fear of that same judgement being meted out to me if I don't keep my mum in her home.
    Nicky - you are quite right - it is easy to be sentimental about caring, but there is often little practical help for carers themselves. It was only the Age Concern dementia outreach nurse who told me I had to have a break when I had been feeling desperate for months and months.

    And I totally agree that there is a convenient, sentimental rather than loving, political cost cutting agenda lauding carers & criticising care homes and not accepting that local specialised residential care is sometimes the only thing possible and right.

  5. Where my daughter lives there is no help for carers they are treated as scroungers even by the so called experts. They are told to go to work while their child is at school. As it took three years to fight for a place that was a 10 minute walk from his home that specialised in Aspergers there wasn't much time for paid employment. SEN departments are more interested in budgets than children and some completely clueless. One officer looking at a school for 3-5 years olds when he was 6. They have this obsession with sending these children in taxies miles away each day where if the parents are poor and without transport they have to beg to go in the taxi to talk to the teachers about their child. Their idea of what is best is what is the cheapest they can get away with. My daughter had a breakdown two years ago and is living on a knifes edge now. As a career of a very large child with Aspergers, one of his obsessions is eating and he will do anything to take food, she just asked the council for some sort of locking system for her kitchen cupboards but they declined to assist. My daughter only weighs 9 stone he is nine and weighs nearly 8 he could take her down so easily. They will be a time when she has to make the decision to send him to a boarding school and the grief will be compounded more by the Local Authority who make the selection process for disabled children regarding school placements so drawn out and painful. My heart goes out to all disabled children and their carers but especially to those with Autism a very mis understood condition by Specialists and teachers alike that make caring for a child with it doubly difficult.
    My daughter has been on a dramatic journey from being condemned as a bad parent (pre diagnosis) to now being ignored by social services because they now understand what they put her through. She has never had any actual help from anybody; countless assessments where they conclude she has enough family to help and this in itself is depressing when all you want to cope without continually asking a family member. Some children and adults will always need care that cannot be provided in the family home where there are other children and adults to consider too. The government has found it convenient to make people feel guilty about putting their love ones in care but of course only if they have to foot the bill otherwise your welcome to pay out thousands in care!

  6. abolsutely.
    and it isn't just a morality issue it is a mortality one - carers/family will die and then what?

    alternative care will need to be in place then, and for some families outside-family care can be the best option for the individual at an early stage rather than suddenly enforcing this when carer dies (or is unable to continue caring).

    using residential respite - for example - is not abandoning my child but preparing him for a life in the future when I won't be around. it is also pragmatic.