Real people, real lives: Digital archival collections beyond academia

For better or worse, it is increasingly accepted that it is no longer the ideal to conduct research which extends the boundaries of knowledge merely for its own sake; which supports, builds upon or refutes the work of others, but which ultimately reflects back upon an enclosed and self-sustaining world of scholarship and discourse. Researchers are encouraged to find additional ways in which their work can be taken out of its hermetic confines and made relevant to new audiences or to propose projects which set out from first principles to demonstrate impact elsewhere in society. From medical processes to new technologies, there is a longstanding tradition of wider impact in STEM, but this can be a more difficult challenge for the arts and humanities, wherein knowledge and learning as ends in and of themselves are often the norm.

One project which seeks to redefine and extend the types of engagement with primary sources, beyond those that we are used to seeing, is Dr Owen Barden’s work using the Jisc-hosted UK Medical Heritage Library (UKMHL) to offer people labelled as ‘learning-disabled’ access to their own history (a history from which they have often been excluded, through the presence of a number of structural and societal barriers). Dr Barden, who is senior lecturer in disability and education at Liverpool Hope University’s Centre for Culture and Disability Studies, is the recipient of a Jisc-sponsored British Academy award to support his research, which he has used to organise a series of workshop sessions with adults recruited from disability groups in and around Liverpool. Dr Barden was kind enough to reach out to the Historical Texts team at Jisc with an invitation to come and see how the funding was being spent and how the digital archive that we deliver could be used to generate new responses from an important yet neglected user-group.

Earlier this week, I was finally able to make the journey to Liverpool to observe and take part in the latest of the project’s Workshops. One of the last of the planned events, this session’s goals were to coalesce and sum up the thoughts and responses generated in the earlier meetings and it was a good point at which to join the process and see what had been achieved and how the participants viewed the project. The basis of the workshops is the exploration of one individual’s story – a microcephalic woman in nineteenth-century Italy – and the way in which her case was viewed and recorded (and consequently transmitted to the present day) by the medical profession of the age, both in Italy and in the UK. The project participants are people with various conditions that might be labelled as ‘learning disabilities’, their carers and volunteers from The Brain Charity (who are partnering with the project and provide a venue for the events).

The format of the workshop was a well-structured conversation, led by Dr Barden, and supported by a graphical facilitator, who had to work industriously to channel the constant stream of ideas and opinions into a banner-sized visualisation which will become just one of the project’s lasting outputs, along with an accessible website and more traditional aspects such as journal articles and conference papers. The discussion itself was lively and collaborative, with participants expanding upon one another’s ideas, and the whole exercise was grounded in a great deal of empathy and appreciation of the subject as a human being and not simply a medical curiosity. Indeed, there was an undercurrent, sometimes explicitly stated, of suspicion of medicine and academia, with their formal language and cold objectivity, which, it was clear, was not directed solely at the distant past. Indeed, the conversation moved naturally and often into areas of personal experience and reflection not just on the differences between the 1870s and today but also the changes that have occurred within the participants own lifetimes. The group’s energy and level of enthusiasm for the project were as impressive as they were consistent, and they worked together to communicate their responses, even innovating with, for instance, the use of drawings to express their thoughts and feelings.

What stands out most from my brief interaction with this project is the significant degree of interest shown by this group in working with historical content that we deliver – if we are to be honest – in the expectation that it will be used primarily by researchers with some level of formal training in ‘historical method’. Whilst some preparatory work was undertaken to make the historical material more ‘accessible’ to modern, non-specialist audiences, I believe that the real key to unlocking the participants’ engagement with the source material was in the provision of a clear and understandable mechanism for reacting to historical materials. Once this means was in place, in the form of the selected content, the workshops and their guided discussions, the responses themselves came easily and fluently from a group of people who had no difficulty in bringing fresh and meaningful interpretation to the content. In the near future, there are plans for the workshop group to participate in a scholarly conference – an opportunity to contribute their findings and experiences of the project, which the members that I spoke with viewed with enthusiasm and which they contrasted with the limited expectations society had placed upon them.

This is a highly worthwhile project which engages a set of users who can demonstrate unique and powerful investment in the subject matter yet who have been traditionally denied access to the history of their own experiences. As an example of extending ‘impact’ beyond the traditional pattern of influence and citation, it is to be commended. Perhaps, before long, projects such as this one and others, which seek to benefit both traditional scholarship and other groups in society, will increase in number and become more part of the mainstream. In the meantime, we can look forward to the completion of this project and a series of outputs which will reflect the investment, commitment and hard work of all involved.

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