Today family members and self advocates and other people who care about people with learning disabilities travelled to Southampton in driving rain in the hope of seeing justice done, for Laughing Boy and for the many others who have died unexpectedly, and without proper investigation at the hands of an uncaring NHS organisation. The justice has not yet arrived. I believe that it will.
After much deliberation I did not join them. I could not face the early start, and the lengthy journey, around a choc a bloc M25 on a Monday morning. Instead I decided to use the time to try to say something useful. Here’s my attempt.
Sara Ryan’s courageous campaign has highlighted many shortcomings in the way people with learning disabilities are treated. One of these is the demonization of families who speak out, challenge, argue, and try to secure a better life for their relatives. She has been described more than once as ‘toxic’. Her courage has emboldened other families to describe their own treatment at the hands of professionals. On the face of it this hostility is mysterious. The social care system relies on families doing most of the caring. If they did not it would most certainly collapse. And, professionals should have the best interests of people with learning disabilities at the heart of everything they do. This is true also of most if not all families. So why the animosity? I don’t think I have an answer. I can show it has a long history.
In the early twentieth century there was no attempt to hide the belief that families were to blame. Mental deficiency was inherited, so it was believed, therefore it was legitimate to treat families with suspicion, and keep them at arms’ length. The ‘colonies’ in which many people were warehoused to prevent them having children were often in remote locations, hard to reach by public transport. Visiting hours were restricted to once or twice a month. Families never got to see behind the scenes, where their relatives lived. And outgoing mail was censored. What is less known is that when people were ‘ascertained’ as being ‘mentally defective’ but remained with their families, those families were kept under surveillance. Living with family was probably the situation for the majority of people, as it is today. Officials would visit once a month to check up on the families. There was a standard form to complete, issued by the Board of Control. It asked about the family’s income, the number of bedrooms, the cleanliness of the home, the ‘character and conduct’ of the defective, health, employment, leisure activities. It also asked about the ‘supervision and control exercised over the defective’. This included the question:
Is the general supervision sufficient to minimise the risk of marriage and the precreation of children?
Families were, in effect, expected to be jailers. If they failed in this, there was a likelihood that their relative would be removed.
The Visitors’ comments were sometimes quite sympathetic. They could recommend that some small material comfort was offered, a clothing grant, money for dentistry. But often they were highly judgmental. This comes from a form completed on a young woman in 1946.
She (the mother) was hostile and rude …. She is a foolish woman …
This language is not unusual.
After World War 2 there was a gradual change in the language used. It becomes noticeable that around 1950 pity rather than condemnation begins to creep into official language. ‘Poor little souls’ and the like. And there grew a recognition that families deserved support in caring, hence the growth of day centres, respite care, and residential facilities. There are some good stories from this period. Ann and Michael Tombs recalled that as Mencap activists they had direct access to David Clifton, Bedfordshire’s Director of Social Services in the 1970s, and a lot was achieved. But more often families had to battle to be heard, and many services which, in today’s language, had been co-produced, with the active support of families, were gradually taken over by Social Services, and the sense of partnership was lost.
In the 1980s the advent of self advocacy ironically gave professionals and statutory services the perfect excuse once again to keep families at a distance. The argument that families had no place in decision-making for adults gained traction, and was underlined by movements like Citizen Advocacy which argued that people needed an entirely independent advocate who could help them stand up for their rights – including against over-protective families. At one level you can’t argue with this, but it set up an unhelpful dynamic, which has been exploited by Government, for example setting up 2 Forums in the wake of Valuing People, one for family carers, and one for people with learning disabilities. The two work together, but the split makes it more difficult to speak with one loud voice
At the same time Government accepted the arguments of the Disabled People’s movement for equal citizenship to be achieved through giving individuals budgetary control. Direct Payments and Individual Budgets were supposed to be a device to further the choice and control of people with learning disabilities – maybe even give them independence from their families. In practice, as Mark Neary’s blog illustrates so well, they have passed the care manager job over to families. But, as Mark’s blog also illustrates, those families are under surveillance, and, if they appear to be failing to control their son, daughter, brother or sister, are still in danger of having their relative removed, with precious little say in their destiny. That shocking photo of the young child standing at the gate of the Assessment and Treatment Unit trying to speak with his older brother which trended over Christmas is not so far removed from the treatment of ‘Emily’ a patient in Leavesden Hospital in the 1940s. Emily had a young son – he was the reason she was incarcerated. Emily’s mother pleaded to be permitted to take the boy into Leavesden to see his mother. She was refused – on the grounds that it would not be good for him to know his mother was a ‘mental defective’.
What I have been trying to show here is that animosity to families has a long history. The Laughing Boy Campaign shows that it is still disastrously present. Staff in Slade House did not listen to the family’s concerns about their son’s epilepsy. They kept the family at arms length, and condemned Connor’s mother. He died. This behaviour would not have been out of place in the mid twentieth century. I still do not understand why.