This was part of the introduction I got from the Charge Nurse as a Student Nurse in the late 1980s to the ward he managed in Ladysbridge Hospital, Banff. While his message was meant to convey that change was taking place, I must admit that is not the main lesson I took from it.
My heart sank as it cemented an understanding for me about how people with Learning Disabilities were viewed in institutions and also how progress was measured. There was no irony in his tone, and while I am always one for honesty, and starting from where you are, rather than where you want to be, the sense that the normal rules of dignity, privacy and choice did not apply here were there for all to see – if you were looking.
Similarly, in other Villas (wards), men acted with some confusion when encouraged to cover themselves with a towel when waiting for a bath while taking part in the conveyer belt system of one person waiting for a bath, one in the bath, and one drying themselves, all in open view. Every infringement of basic rights had to be pointed out, and alternatives demonstrated, it was like wading in wet concrete.
Sometimes things would change, often it depended who was on duty. Key to the ability to effect change is the sense of power and answerability. In this setting there was a caution around some staff when you were talking about significant changes, many tried to do what they could under the radar. Others revelled in the power they had, and there was often little sense that anything was to be gained by trying to challenge. Efforts were often quickly undone with no opportunity to challenge. However, every unchallenged abuse of that power just built the walls of the institution higher.
Fast forward to 2019 and we still have people placed out of area, often for vast sums of money, due to a lack of “specialist provision” locally. “Lessons have been learned” keeps getting trotted out after every Panorama / Whorlton Hall / Winterbourne View exposure of abuse and very little really changes. Glossy brochures and new language promising bespoke behavioural input etc. but behind that, demonstrated by these chronic failures is the fact that the power base has not changed in these places. (There are other places the power hasn’t changed enough, and we must remember an institutional experience can be had in a lovely flat if you are not listened to and in charge of your life).
The difference here is the scale of the separation – distance from community - often isolated locations, out of area – separate from family and friends.
To me some of the main factors are the culture, the answerability, the voice of people and their power. The culture of separateness, limited visiting, less likelihood of being involved in selecting and evaluating staff than in mainstream services. Less chance you could be confident someone would listen if you reported an incident.
People don’t often choose to live in these places – they are destinations of last resort. So, we need to be better at exploring alternatives, with flexible use of funding well before such crisis points are reached. Self-Directed Support says this should be happening, even in complex cases, but evidence indicates this is not always as creative and person centred as it could be. After people move there, it is also too easy to lose track of the fact that these placements are often a holding pattern, and they slip into a more permanent solution as the options that weren’t there before locally to support someone well, continue to be missing. They don’t solve the issues people are struggling with in many cases, they manage by controlling the environment, with an illusion of safety.
Common features in many of these situations is that once you start digging, any pretence that nobody knew is quickly eradicated. Some people knew, and despite that it was allowed to continue, in the same way as the residents at Grenfell Tower knew that things were wrong but their concerns were repeatedly ignored. This is the cycle of oppression which is too often trivialised by these who are used to wielding the power. An example of more recent institutional thinking was a young man moving into a supported flat after a life spent so far in hospital. The Consultant wanted the provider to put bars on the window as he had “absconded” from a locked hospital ward on a regular basis, it was pointed out we would not be locking his front door (or telling him he could not leave) therefore why would he need to climb out a window?
We cannot continue to shrug our shoulders and say that is just the way it is, if history has taught us anything, it’s that things do not just gradually get incrementally better due to increased knowledge and understanding. There has to also be a will to change driven by people who have been oppressed, and those around them. If we don’t demand real action, and crucially check it is making a difference, then without this shift in power and voice, we are condemning people who are at their most vulnerable to be powerless and voiceless, and there are no excuses that make that acceptable. To know and not act is to be as responsible as those continuing these practices.
We must demonstrate our trustworthiness, act to minimise separation and support the creative solutions that avoid this last-ditch destination. This requires thoughtful respectful development with people, asking the question, what would it take to have this work well?
Or we can celebrate people having their own facecloths….
A personal reflection on attitudes towards rights in institutional settings, and the implications of continued reliance on large out of area facilities to support people with disabilities.
A Blog for In Control Scotland
by Alastair Minty (Associate)