Why do some people find it so hard to be heard, to get the services they want or to be respected to make their own choices? It’s a question I’ve been discussing a lot recently as the Care and Support Alliance try to ensure that the social care bill will give sufficient support to people to have true control over how their social care needs are met.
So what gets in the way of voice, choice and control? Too often the view is that the cause lies in the person – in their disability or the barriers that they have communicating. If that were true, this view would make assessment of who is eligible for advocacy simple; you could measure against a checklist. But phrasing it overlooks three really important facts.
First, not every disabled person needs or wants an advocate. Not everybody with learning disabilities, not everyone with a mental health problem, not every person with autism, not everyone in any group. To suggest that they do is to massively undermine the ability of people to speak for themselves.
Second, it suggests that the problem lies in the person, not the system. I know of many people who have used advocacy who in almost any other situation are remarkable communicators. However, when they are trying to deal with systems, and saying the wrong thing can have long term consequences, communication gets tougher.
Professionals can be hard to contact, are sometimes pressed for time, refer to knowledge you don’t have, use their own language, control access to services and don't always respond well to criticism. It is unsurprising therefore that people are reluctant to speak up and find it hard to be heard. Information and advice might help reduce this problem for some, but for many that is not enough.
But it is often a third factor that forms the biggest barrier; when the preconceived ideas that people have about you stop you being heard or having control over your life and your choices. This is something which I call the credibility gap, and it is expressed in many ways.
The credibility gap is what makes it harder for people with mental health problems to get access to good general healthcare – too often symptoms of physical problems are ascribed to psychological factors. It’s one factor in the under-identification of depression in older people. It’s what makes people with learning disabilities have the validity of their requests and statements challenged, as if they couldn’t possibly understand what they’re saying. It’s the barrier to justice when people in residential report abuse by staff to the police – because we know all care staff are nice and people in care can’t be believed, yes? These perceptions have been shown to be false countless times, yet they persist and compromise the dignity and rights of too many people in our society.
Put simply, the credibility gap is what you experience when someone has made up their mind about you before you’ve even spoken. It’s an expression of all forms of prejudice that allows people in power to undermine or ignore those who need something from them. And the credibility gap is not solely related to disability or age, it’s something that carers experience too.
The dreadful experience of Mark Neary shows this all too clearly. A devoted father and carer to his adult son, Mark faced the prejudice of care staff who decided that his relationship with his son was a problem. Every action he then made, all communications he had with care staff were viewed through this distorted lens. For over a year, Mark’s son was kept in residential care rather than being at home with his father. For Mark, this credibility gap was an impassable chasm despite his energy, perseverance and his eminent ability to communicate well (read his blog – it’s great). One turning point came when an independent advocate was involved who managed to challenge staff perceptions. Eventually the case went to court. Mark won and his son returned home, but the cost to all involved was considerable. That is not how social care should be.
As it stands, the draft social care bill ignores the effect of the credibility gap. Information and advice do not close the credibility gap. Independent advocacy can. (You might want to click on that link and suggest that there should be a general duty to ensure there is information, advice and independent advocacy.)
Even outside the context of the bill, without facing this injustice which so many people face we won’t get the balance of advocacy provision right. But far worse than that, we will be supporting the idea that the problem in communication is a deficit of the individual. It’s not. Rather, it’s a challenge for individuals, professionals, services and the state to address together; communicating openly, fairly and without prejudice to ensure we all have choice, dignity and control in our own life.