Disappearing in plain sight? The strange death of learning disability identity

Simon Jarrett writes: In the summer 2016 issue of Community Living (29:4) Seán Kelly wrote about the increasing difficulties he is facing as a photographer working at events involving people with learning disabilities (Should staff discourage people from having their photos taken?). Staff were finding numerous pretexts, mostly under the general cover of ‘confidentiality’ or ‘consent’, to prevent people having their photographs taken. Is this a genuine concern for privacy and personal rights, or part of a more concerning trend which denies people with learning disabilities the right to a public identity? Does the label of ‘service-user ‘mean that you become a person without a story: someone who lives in society, but is not really seen as belonging to it?

As humans, we all have an identity and a life story, so what does it mean for our humanity when these are denied to us? It seems the problem identified by Seán is not an isolated one. Here Laura Harris and David O’Driscoll talk about the many external obstacles they have faced in supporting people with learning disabilities simply to tell the story of their own lives.

Mencap Cymru’s Hidden Now Heard project has been working for over two years researching and capturing the stories of Wales’s long-stay hospitals (or asylums as they used to be called), the last of which closed in 2006. These hidden histories of former patients with a learning disability, the staff who worked there and their relatives have informed five museum exhibitions across the country with three more scheduled before the end of the project in 2017.

However there is a stark and unavoidable gap in our research and in the voices that shape our understanding of such places; the voices of former patients who called these institutions home.

Fear

It is not for want of trying but time and time again we are met by similar responses from relatives and support staff. There is a strange sense of fear and an absolute desire to ensure the people they support are nothing but happy.

We are often told that a person lacks capacity, will get too upset or doesn’t understand what they are saying. In essence the cycle of denying someone a voice, to be heard and to have his or her experience validated, continues with adults infantilised by this idea of protection.

Not everybody will want to share their memories of course – and many support staff and families we meet are very supportive – but such misconstrued protection results in the continued silencing of this diverse community within our society and ensures their stories will never be heard.

Laura Harris is the project manager of the ‘Hidden Now Heard’ oral history project. You can follow them on Facebook https://www.facebook.com/hiddennowheard/

 Opening a can of worms?

David O’Driscoll reflects on the struggles he has faced encouraging people to talk about their lives in NHS institutions.

In 2000 the NHS Trust governing the closure of Harperbury Hospital in Hertfordshire had an imaginative idea. The long-stay hospital for people with learning disabilities was closing, after 70 years. The first patients were admitted in 1928. The idea was to give a secondment to an NHS worker (which was me) to organise various events including a history conference, exhibition and, most of all, a closure event. This would involve oral history accounts with ex-hospital patients and staff, and fireworks.

In its heyday Harperbury had up to a thousand patients. Its catchment area was nearly the whole of North London, east and west. It has a fantastic history. J F Kennedy’s family funded a research project there, The Kennedy-Galton Centre. Because of this link the hospital had some famous visitors, including Jackie Kennedy and Muriel Humphrey, wife of Vice-president Hubert Humphrey. The famous Tottenham Hotspur football club, including their star player Jimmy Greaves, played the patient team in 1969. There were also more difficult moments, including various overcrowding scandals in the 1960s and early 1970s.

Paternalistic

The system governing the lives of the hospital could be described in many ways but I would use the term ‘paternalistic’: most of the hospital patients’ lives were tightly controlled; they were not given freedom or choice; most decisions were made on their behalf.

Much of the research on patient resettlement found that choice was something they particularly valued. In 2000 the literature on this aspect of social history was slim. In particular we were lacking accounts by ex-patients themselves. For this reason I wanted to put them at its centre. I was sure I would get lots of contacts. I put ads in the local paper (I got one reply, a nurse) and contacted various local networks. I waited by the phone, but it never rang. Puzzled, I thought maybe I was going about it the wrong way. I felt that support services would get in touch with their ex-patients, once I explained the project. I contacted many social work teams and colleagues in health. I received little response. It was puzzling as I was always being told that this history was important, as it was ‘hidden’ and that we needed to record it now as many ex-patients would not be around much longer. There was a sense of urgency. I went the direct way. I obtained lists from the hospital’s resettlement team, and contacted the support services, who were cautious and uncertain.

Finally I did get a few responses but it was clear that a number of the support staff felt I was opening a ‘can of worms’, that I would be leaving the support services to deal with the emotional distress I had opened up. They thought someone talking about their institutional experience would not be a good idea and that people were today leading a ‘happier life’ in the community. Why unsettle them? I was told that clearly ex-hospital patients would not at any price want to discuss their experiences. We need to respect this. However, it was also clear that many would value the opportunity to do so and they had not been given the opportunity.

Failing people

Today, 15 years later, are we in a different place with history? In many ways I think we are. The Social History of Learning Disability group based at the Open University has pioneered a historical engagement which has involved people with learning disabilities in their studies. There are also currently a number of large-scale heritage lottery funded oral history projects  on long stay-hospitals in Wales and the north of England. There is also an annual two-day conference each year. This year’s theme was ‘Why history?’  It was clear, whilst listening to presentations, that many of the difficulties I had experienced as a history worker back in 2000, were still encountered today.

This got me thinking. Are we failing people today by not talking about their past experiences. There are still many people who have spent a lot of time in an old long-stay hospital. Hertfordshire has a remarkable history and amazing stories yet there is no mention of it in any of its literature. This is not unusual: most NHS trusts do the same. While other services, if they mention history, do so as a public relations exercise to emphasise how progressive they are  today.

We know best

Despite much progress in services, is paternalism still dominating today? We know best! The main reason I suspect there is such difficulty with history today is because it is a cause of anxiety – maybe even embarrassment, shame and guilt. We do not like these feelings. They are opening up a can of worms indeed. As George Orwell wrote: “Who controls the past controls the future. Who controls the present controls the past.”

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