‘Control’

Control is a story of abuse.

There were many parts of Rosa that acted outside of her direct control and she would watch from somewhere above or outside while they got on with it. Most of the time they just responded to whoever was in the room, but occasionally one took the initiative and went out on a limb, so to speak. 

It draws on my professional encounters with victims and recent reports of child sexual exploitation where victims were frequently not heard and were sometimes also criminalised and returned to their abusers. Although I have written many factual reports about the impact of abuse on vulnerable people – the detachment that goes from emotional disengagement right through to almost complete disowning of a body that is experiencing repeated assaults and violations – I sometimes think fiction can get a little closer. I hope this story feels real to the people who matter.

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Winterbourne’s Silent Majority

In 1981, I went on placement as a clinical trainee to a large mental handicap hospital in Surrey. I had never encountered people with learning disabilities before, and I was shocked to the core. But I was a qualified general nurse, and I was used to clearing up the messes bodies make when they’re ill or distressed. I was also used to pulling curtains around people on bedpans, to chasing doctors out of the women’s wards while personal care was being delivered, and to helping people to eat when they had forgotten how. I saw how morale was raised by giving patients a wash and set before visiting. We had to dismantle the bed head to achieve that, and spread rubber sheeting over the floor to contain any splashes. Imagine then, finding wards stacked with beds almost touching each other. With toilets that were nothing more than a series of holes cut in a wooden seat – no partitions, no toilet paper within reach, and no flush mechanism. Imagine being told that the elderly chap I was going to ‘test’, could be found on one of the ‘boys’ wards, which was in a different wing from the one housing the equally mature ‘girls’. Imagine receiving a request to go to a ward to identify ‘the shit flicker’.  My supervisor there; defeat in her shoulders, her eyes, her mentality, said she didn’t know what we did that the local vicar couldn’t do. I don’t know what she meant, but I could see that she meant it.

I was there for two months, and beyond the desolation and social impoverishment, saw no physical abuse. A year or so later, I found myself on placement at another institution, this one in Kent. Darenth Park was a 2000 bed repository for adults and children with learning disabilities, and it was due for closure. It smelled of cabbage and urine, and the windows were grimy, sticky, broken portals through which the defeated campus could just about be seen, if you felt inclined to stand there long enough. The patients often stood there. They stood around in all sorts of places; rocking, flapping, biting their hands, eating dirt or bits of detritus and old dog ends.

That’s not to say there were no activities. Some of these were grand and much missed once the place finally shut down. Concerts, films, fairs; run by staff with the assistance of the ‘high grades’ – people thought capable enough of doing menial work, but not of receiving payment. A man I spoke to a couple of years later, moved out to a brand new hostel in the community, was depressed and miserable because he had no role in this new environment, the new improved and normalised world we had given him. He had experienced a dramatic loss of status by shifting from being a valued member of the hospital fire department and ‘body gang’, to potato-peeling kitchen skivvy. That we valued potato peeling (for him) as a step towards independence meant nothing as kitchen work had been done by ‘low grades’ and women (sic) at the institution.

By 1984, I was working in this new world and beginning to offer talking therapy to our service users. Bromley was one of the first boroughs to close its institutions and begin providing community ‘core and cluster’ residential services for people, many of whom who had never lived anywhere but an anonymous hospital. One of our first groups arrived along with two large bags: one contained their toothbrushes, the other their teeth. Neither offered any identification by which contents could be matched with their owners – assuming there had ever been a link. Certainly their clothes were more communal than individual, and had the look of expedience about them. Shapeless frocks for the women, trousers with elasticated waists for the men. As a team; nurses, psychologists, psychiatrists, trainers and educators, we set about de-institutionalising our residents, and watched the years dissolve away as they got the hang of shopping for clothes, having their hair done at salons, and cooking a meal for six after doing the shopping themselves with minimal support. There were so many highlights, watching people moving on to live independently, to get jobs locally, to join local church and club communities. But two stand out for me, both involving young men with Down’s Syndrome, and each tiny but triumphal in its own way. The first was a birthday party at the hostel where there was real party food (adult), real music (up to date), and real refreshments (proper wine). ‘Steve’, a largish but shortish chap whose appearance had been less couture than convenience, moseyed into the room wearing a Miami Vice outfit of ice green shirt, white trousers, and dark glasses. Cool before ‘cool’ was ‘cool’. The second was when ‘Alfie’ went shopping in Bromley on his own. ‘Alfie’ used an electric wheelchair (which no one could fix except the chap who had dismissed kitchen work as being beneath him) and was a tad gung-ho about its controls. We had a call from the police to come and get him as he had been yahooing at speed on the wrong side of the road in the high street and causing traffic chaos. Whatever else we did in those early years, with our science and our theories, it is the freedoms of fun and confidence, rule breaking and identity-stamping that, for me, exemplify the move from the dehumanising degradations of the past to the liberations of the present.

That’s why I was so shocked to see the BBC Panorama programme about Winterbourne View. In thirty years of working in learning disability services, I have not seen abuse of this kind. I have heard of plenty; often told me in therapy sessions by people only able to say what happened when the perpetrators were far out of reach. Institutional abuse has come to light via the media as well. Long before Panorama, ‘The Silent Minority’ was filmed undercover at St Lawrence’s hospital in Surrey, and tipped the impetus for change hard over into national action. The difference, barely forgivable as it is, between these two exposures, is that the St Lawrence’s abuse took place in an era of discriminatory partition where people with learning disabilities were feared, thought of as untreatable, and tidied away by society to large, closed communities. Parents were advised to ‘put him away and have another baby’, and the people who worked in the ‘away’ places, were under-resourced, under-skilled, undervalued, and equally institutionalised groups lacking direction or proper training. Society did not much care what happened to the patients, and families often abandoned them. Two women, cousins of the Queen, were patients of one of the hospitals I passed through in my training. The fact that no one knew quite who they were, or where, suggests that family visits were not exactly frequent:

For several decades two of the Queen Mother’s nieces, Katherine Bowes-Lyon and Nerissa Bowes-Lyon, were kept there without visits from the Royal Family and were declared dead by Buckingham Palace in an intentional fabrication. Wikipedia

Winterbourne is a different matter. These staff are not living onsite, isolated from the rest of society and so insulated from the norms of decent human behaviour. These staff have the benefit of news media, training, friends, family. They are people with lives embedded in the real-world who have direct access to ways of developing a moral yardstick, and yet they did not. What I saw was sadistic bullying perpetrated by a few and acquiesced to by the rest. I have seen neglect and poor practice born out of ignorance, fear and inexperience, and I have seen it turned around by people with skill, care, and respect for both the service users and the bewildered staff teams.  This was not in the same league, and as such, it is astounding that the CQC did not pick up the signs when inspections were made.

Or is it? I would like to think that I have a ‘nose’ for the ethos of a service. That my experience allows me to see through the scripted presentations of good care to the plot holes that might indicate inadequacy. It’s worked in the past, but then I’ve been around a good many blocks in the development of that instinct, and I have more time to probe. If the CQC missed this, I have to speculate that this was due to inadequate experience and inadequate time. They did not know how to look for the plot holes, and did not have the time to reflect on the gaps. The tragedy is that the CQC is being given even more responsibilities, has even less funding than before, and if the government’s plans to allow free access to NHS services by private enterprise, its remit is going to be catastrophically unmanageable.

The answer? I wish I had one, but I suspect that part of the solution is public conscience. I hope that this undercover expose will drive local communities to make more contact with residential services of all kinds, and not just on open days. If local people become socially involved with such places, become visitors who bring the outside world with them to assist a bit, entertain a bit, ‘be with’ a bit, fewer bullying, torturing criminals will be able to get away with their abuses. We would soon know about the provisions where no one is allowed beyond the visitors’ room, where appointments have to be made to drop in on a friend who lives there, where glossy brochures are nothing but hollow scripts masking neglect, misery, and the annihilation of humanity. Most people have good ‘noses’; they know a bad smell when they find one, but they’re often intimidated by the authority of the system, the people paid to regulate and make safe. But as we pay them, the people who staff those systems and exercise that authority on our behalf, do we not also have some rights to question? Are we not also responsible?

Michael Gilbert, murdered by the people he lived with

face of Michael GilbertThis is the man whose name I could not find. It was on a news item that preceded a programme I had recorded and I am relieved that I did not imagine it but horrified that the details were far worse than I had thought. here are some quotes from the newspaper:

‘Michael Gilbert, 26, was used as a ‘dogsbody and slave’, shackled to a bed and attacked by the group’s pet pit bulls.’

‘Mr Gilbert finally died after a new form of torture was devised, involving members of the family jumping on his stomach.’

‘They then hacked his corpse into pieces at their home in Luton, Bedfordshire, before throwing it into a lake known as the Blue Lagoon in nearby Arlesey.’

This group of individuals even invented a ‘game show’ in which people were paid to assault him, and they chased him down when he tried to escape. The police apparently felt unable to help Michael because he told them things would be worse for him if they did, an example of the application of the legislation around consent that misses by a mile the spirit that brought it into being.

Vulnerable Victims: a new page to record our shameful society

People with learning disabilities used to be unseen members of our communities, hidden away in institutions with no voice and little contact with their more advantaged neighbours. The changes in philosophy that came with Wolfensberger’s ‘Normalisation’ thrust in the early 1980s led to closure of institutions and the end of inappropriate incarceration for people whose only ‘fault’ was one of intellectual limitation.

I have worked in some of those institutions and I have also worked in services at the leading edge of change. In the 21st century, it is the norm for people to live as independently as possible with support from agencies set up to assist. It gives people pride. It gives them a sense of purpose. It enables families to live as units and not separated entities – one part able, the other not.

Unfortunately, it also brings people into contact with society’s exploiters, abusers, and manipulative psychopathic killers. People who use drugs that obliterate any sense of decency and empathy. People who are so distanced from their humanity that they can imprison, torture, rape, and terrorise vulnerable individuals unable to fight back.

Today I tried to find the details of another death but all trace of it had vanished, due probably to world and national events. A volcano causing travel chaos and our political leaders on the trail of electoral glory. This man has vanished from sight, my sight anyway, and so I am unable to give him just this tiny acknowledgment. It occurred to me that many such deaths and tragedies may go unremarked and so the shame of our society’s behaviour will remain unaddressed because, well, they don’t add up to much do they, if their headlines don’t last?  Well they might if they are all on one page.

This new page will keep a record, a dishonourable record, of the names of people with learning disabilities who have been murdered, raped, or tortured. It starts now, from 2010. I hope it’s short and I hope it gets shorter. If you have details that are reported in the press, please send the link and I will put the person’s name here so that they are never forgotten.

Death of David Askew, a man with learning disabilities

David-Askew, a man with learning disabilities This 64-year-old man did nothing wrong. He had learning (intellectual) disabilities and struggled to cope with the day-to-day demands of an ordinary life. All he wanted was the comforts of his home, his trips to the shops, and his cigarettes. What he needed and maybe didn’t know so much about was the support of his family and neighbours, and this he seems to have had in abundance. He also needed the respect and consideration of the wider community, some of whom hounded and harried him to the point of his death.

No one should have to tolerate the abuse and bullying to which he was subjected, seventeen grinding years of it.  But sadly it isn’t new, people with learning disabilities, arguably the least equipped to deal with the moronic semi-articulate attacks of people who have reason to know better, have been bullied to their death before. One man was pushed off a viaduct, another was kept as a slave and beaten by his ‘adopters’ until his life was finally bashed out of him.

To say that this is not acceptable is to denigrate the memories of those who have suffered in this way. It should not be necessary to state the obvious. It should be so horrendous as to be unbelievable, but it isn’t. People with learning disabilities are poorly considered, poorly represented, often unable to represent themselves, at the bottom of the social pile.

Well let me say this; the people I work with are funny, they love music, they love their partners and their children, they have bad days, they have jobs, they make art, they do community work, they drive their families mad, they dance, they act, they engage in new and wonderful things, they are HUMAN BEINGS. The group I’m working with at the moment is helping us with our virtual world research and they may just be at the leading edge, the crack in the dawn of innovation, that will devolve to all of us in due course. What they are doing right now could influence how you find out about your hospital procedure in the future. Their comments and involvement could be the start of a future NHS information procedure that makes knowledge and consent available to all but the most incapacitated of us.

But above all that, isn’t this just about behaving in a respectful andcivilised manner to the people in our community? If you know of anyone who is being bullied and abused, just think about what you could do to help. It might make all the difference.