Why study the history of learning disabilities?

Why study the history of learning disabilities?

'Forgetting the extermination is the final act of the extermination itself' (Raoul Hilberg)

Is spending time thinking about the past is an unnecessary luxury when making things better in the present needs all our attention?

I do not think it is.

And in July 2016 I had the luxury of being able to spend 2 days thinking about this at the Social History of Learning Disabilities Conference, in Milton Keynes. I came away more than ever convinced that it really matters to remember the past, and use it to reflect upon the present.

The question, why history? was answered by all the speakers, in different ways.

Perhaps the most direct messages came from two women who used the platform to tell us about their lives.

Angela told us how she had been beaten by her mum, until rescued by Oakley Grange Day Centre, and placed with foster parents. I had known Angela for years, but I didn't know that about her. She thought it important that we hear her story.

Sue, like Angela from Central England People First, told the conference that she had once had a job, in the shoe factories of Northamptonshire. But since they closed down she has been unemployed. She now volunteers for Central England, and is their secretary.

Mencap Cymru's Hidden Now Heard team, who are collecting stories from people who lived, worked in or knew about the four large long stay hospitals in Wales, explained how difficult it has been to actually speak to former residents. Many are now very old, as Wales's closure programme goes back to the 1980s, but this is not the only difficulty. The speakers explained that speaking to former residents, to ask them if they did want to take part, was frequently impossible because support workers speak for them, and decline in the belief that it would be upsetting to remember the past. Despite being out of the hospitals, these former residents were not given the choice to make for themselves. Conversely, staff are only too willing to come forward - clearly memory is less problematic when you do not have the label of learning disability ....!! Some things have not changed as much as we would hope.

Helen Atherton and colleagues from the Brandesburton Hospital Oral History Project reported similar barriers. And their difficulties have been compounded by stringent (and unnecessary?) restrictions on use of photos by the University Ethics Committee. Clearly history matters so much, that many devices are in use (including Ethics, Health and Safety, Data Protection, Confidentiality, the Mental Capacity Act) to prevent people even being given the chance to tell their stories. I wonder why ....

David Stewart chose four people's stories from the nineteenth century to show that if families had money, life could be Ok for people with learning difficulties; whilst it was pretty dire for those with little money. On the other hand, wealthier families could be persuaded to send their relatives to places which were manifestly unsuitable, believing that their relative would benefit. So, money was not the sole determinant of a good life -prompting me to reflect upon the huge amount spent on ATU places today.

Light was shone on contemporary reluctance to disturb the ghosts of the past by David O'Driscoll, who is that rare beast, an NHS history worker (part time). David pointed out that the NHS has a pretty poor record of caring for people with learning disabilities. Not only the iniquities of care in some long stay hospitals, but continuous and distressing evidence of failure to treat people well when they are sick now. But the NHS is determined not to think about the past. We all know that the physical incarnations of institutions have been airbrushed out of history , replaced by modern, often luxury flats. More often than not, with no memorial to say that people once lived and died here, whose graves are unmarked, whose lives are unremembered. The NHS seems to be trying to be an organisation without a memory of the ways it has failed people with learning difficulties - and, if Southern Health's record is anything to go by, is continuing to do so.

Simon Jarrett gave a strong framework for thinking about history in his Keynote speech ' The history of the history of learning disability'. He divided the history of history into 3:

The history of medicine and doctors and institutions who had laid claim to expertise in treating people with learning disabilities. This prevailed into the final quarter of the C20

Then it was people like me, the second wave, social historians who emphasised the importance of history with as well as about.

And, more recently, cultural historians like Tim Stainton and Chris Goodey, who argue that intellectual disability is the invention of a society which values intellectual prowess above all else.

What these histories have in common, until quite recently, has been a belief that the past was bad and the present better. But taking a more objective position might prompt us to stop and think. The past was not always so bad, the present is not always better. We had examples at the Conference. That residents of long stay hospitals, some of them, almost certainly had more opportunities for sexual enjoyment than people in community homes now, for example. And, Simon noted, picking up themes from earlier speakers, that modern legislation (MCA, Data Protection etc.), almost always well intentioned in its execution, is having the effect of silencing people in the name of keeping them safe. This, he remarked, is a very modern preoccupation.

But, if we still need reminding why history matters, the next speaker, from Austria, Gerhard Hofer, held the trump card. Gerhard told the story of the extermination of Austrians with learning difficulties during the holocaust. Maybe 150,000 people killed. One parent was told in a letter that her daughter had died because of an epileptic fit. Connor Sparrowhawk's story came into my head at that point. Unlike here, where all trace of the old institutions has been vanished, in Austria the sites of the killings are places of memory. Kathi Lampert, one of the victims of the holocaust, has had her name remembered in the name of the Austrian School of Social Care Education. Gerhard read us a letter written to Kathi by a young student at this School. Unbearably moving.

'Forgetting the extermination is the final act of the extermination itself' (Raoul Hilberg).

There is lots more to say about the Conference, but I cannot improve on that last sentence.My First new blog post