The history of people with learning difficulties is a largely hidden and uncomfortable one. However, a project in Hertfordshire is looking back in order to move forward. Graham Hopkins reports
A state-of-the-art hospital opens in a picturesque rural landscape in Hertfordshire. Local dignitaries attend a celebratory garden party; all very modern, very idyllic. However, the first eight patients to arrive are diagnosed as being "high grade feeble-minded adults". Hangars Certified Institution is open for business. The year is 1925.
Fast forward 75 years, and after being renamed Harperbury Hospital, it is shut as part of the national closure programme of long-stay hospitals for people with learning difficulties.
In the mid-1800s there were 400 asylums (places that offered "refuge") but by 1914 this had risen to about 2,000. In 1879 an asylum opened at Highgate. Its chief physician was Dr Langdon Down, the first man to describe accurately the syndrome that now bears his name. Down believed that the British - with its empire at the time - were a superior race, and that people with Down's syndrome were a throwback to an inferior race ingrained in their facial characteristics - hence the use of the term "Mongol".
As well as being segregated in institutions, "inmates" were often sterilised. The history of people with learning difficulties, and our collective collusion in it, can make for uncomfortable reading. So, as we did with the people themselves, we tend to hide it away.
But a new project in Hertfordshire is bringing the past back out into the open. "I was working with the Horizon Trust which had been set up to manage the closure of three long-stay hospitals for people with learning difficulties in the county - Harperbury, Cell Barnes and Leavesden," says history project worker David O'Driscoll. "As Harperbury was to be the last closed the Hertfordshire Partnership NHS Trust wanted to have something to mark the ending." And the history project was born.
O'Driscoll, a psychotherapist who did his MA dissertation on the history of psychotherapy for people with learning difficulties, was seconded part-time. "I met many staff and ex-patients, laid on some oral history workshops and a conference, and collected lots of historical photographs and materials," he says. "The county has a disproportionate number of people with learning difficulties - partly because of the hospital system. So there was also a treasure trove of about 15,000 medical records stored at Harperbury."
Throughout the national hospital closure programme some NHS trusts had destroyed such records. "I approached the trust with the idea to keep and manage these records and to encourage user and staff access," says O'Driscoll. "I provided support to help with working through files, placing history in perspective and tackling terminology which could be upsetting: terms such as 'feeble-minded' and how to talk to people about that."
The Wellcome Trust has expressed interest in funding an archivist to manage, repair and catalogue the records. "However, this is provided they could be opened up to academic research - there being little medical research on patients and the institutions," says O'Driscoll. "This is complicated - they're still NHS records so there is a legal and ethical minefield to navigate. But we're hopeful."
There is clearly interest stirring. A conference this month - The Importance of History in Supporting People with Learning Difficulties in Hertfordshire Today" - sold out within six weeks. And training and support is in big demand. It is also hoped to mount a permanent exhibition of the history.
With all this interest, fortunately the trust has recently agreed funding for the history project for a further year.
"People are uncomfortable with this painful history," says O'Driscoll. "But I think we also have to try to understand why intelligent men and women did these things. What were the anxieties that led this group of people to being put away - out of sight, out of mind - in institutions away from their communities. And have those anxieties totally disappeared?"
He adds: "If we can understand the anxieties and debates in the past, it may stop us making the mistakes today."
However, the German philosopher Georg Hegel warned: "What experience and history teach is this: that peoples and governments have never learned anything from history, or acted on principles deduced from it."
Nonetheless, in Hertfordshire at least, they are trying to learn something from history.
For further information, e-mail email@example.comLessons learned
Don't be afraid of the past. O'Driscoll says: "Staff feel that opening this can of worms might upset former patients and therefore not do it. But in my experience people are very willing to talk about and explore their past." A steering group - including Professor Dorothy Atkinson (senior lecturer, Open University) and Professor Duncan Mitchell (Manchester Metropolitan University) - provides guidance and support. An overview of the history of hospitals for people with learning difficulties can be found at: www.
learningdisabilityhistory.com. There are plans to try to make it more interactive for people with learning difficulties - so they can make contact and tell their stories through the website.