Winterbourne Is Not the Only View

29/11/2012 17:29 GMT | Updated 29/01/2013 10:12 GMT

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 universally valued as actual people, they are just someone else's problem. The someone else in question are the family carers who love them, fight for them and advocate for them and in advance of carer's rights day on Friday 30th November I want to address the current narrative.

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" it's 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 people like me through ignorance or fear.