Being Human: Kate Forde and Clare Barlow on the collaborative process of developing a gallery which explores our relationship with ourselves, each other and the world around us, and sets lived experience at its heart
What expectations do museums create or reinforce about what it means to have a healthy body or a healthy mind? What are our hopes and fears about new areas of medical research? How can we encourage visitors to feel invested in global challenges such as drug-resistant infections or climate change? In September 2019 Wellcome Collection opened a permanent exhibition that explores some of these questions in an effort to challenge how we think and feel about health. This article discusses the consultative process of developing Being Human, a gallery that explores our relationship with ourselves, each other and the world around us, and sets lived experience at its heart. Drawing on diverse perspectives and personal stories from artists, activists, clinicians and researchers, Being Human seeks to offer a fresh perspective on what a medical museum might have to offer its visitors in the twenty-first century.
Recent surveys suggest museums enjoy a rare position of trust in the UK at a time when other institutions including government and the media are being discredited. Increasingly museum workers are asking themselves, if this is indeed the case, how should that power and privilege be deployed? Can museums be spaces for collective experience in a world that seems increasingly divided? Can they be environments where we connect with each other in order to feel a sense of belonging? And what role might the medical museum play in this context? Can it seek to overthrow the narratives it once helped promote, narratives that have ascribed ‘normality’ or ‘usefulness’ only to certain lives – those of a certain gender, race, sexuality, class or ability – while erasing or destructively stereotyping others?
In some ways Wellcome Collection seems like a particularly unlikely place to ask these kinds of questions. In the first place, it is a museum, like many others, founded on a colonial-era collection originally intended to symbolise Western man’s mastery over the world (and celebrate medicine as an instrument of empire). Secondly, it has a focus on medicine and health which historically in the sector, has tended to result in exhibitions that reinforce negative stereotypes through the display of human remains for instance, or the spectacular presentation of disabled bodies shown in order to be pitied or feared. Furthermore Wellcome Collection is part of Wellcome Trust – a charitable research foundation that on one level at least, exemplifies the notion that science is neutral, and on a steady march towards objective truth, rather than as messy, contingent and chaotic as every other form of social practice.
And yet, Wellcome Collection, including our new gallery Being Human, has become a place where we try to open up some of the more troubling questions about health – and invite our audiences to consider who gets to talk about it, who ‘owns’ it, whose opinion ultimately, matters. This is in part down to our profound belief that expertise comes in many different forms – and that lived experience is as valid a point of view as the professional, medical, artistic, and academic perspectives we also draw upon.
When we opened the Medicine Now gallery in 2006 (the gallery we’ve just redeveloped) it looked rather different. It was intended to be the contemporary adjunct to our historic exhibition Medicine Man, and on one level to express what Henry Wellcome might have collected had in been alive in the early 21st century. Arranged into themes including genomes, obesity, and living with medical science, it presented a range of different objects and artworks in quite a stark brightly lit environment. At the time the gallery expressed some of the most current scientific innovations – one of the memorable exhibits was a mammoth set of volumes containing the code of the human genome – a tribute to the human genome project which published the first rough draft of human DNA in June 2000. In its lifetime the gallery received around two million visits and played host to thousands of tours, special events, discussions, and study groups.
Meanwhile, over the last twelve years Wellcome Collection’s temporary exhibitions have demonstrated a commitment to honouring multiple perspectives. And its programme has developed and expanded over the decade, becoming increasingly informed and to some extent led by the input of patients, artists, activists and others. Having built a reputation for thematic shows we have started to experiment with different kinds of formats – commissioning more artist-led projects, and devising live programmes which take place within the galleries rather than only in our dedicated event spaces. We have also been building relationships with specialist ‘users’ to inform the design of our temporary exhibitions, and created alternative strands of interpretation to give the exhibitions new voices and identities. One of our most successful strands of programming is Open Platform, an opportunity for individuals and groups to submit their own ideas for participatory activities that help create conversation and exchange and takes place in our Reading Room – which is designed as a hybrid museum, library and event space. To date we have run poetry readings, music and dance performances, life-drawing and more.
In 2018 Wellcome Collection published its Strategic Direction for Access, Diversity and Inclusion. Available on our website it sets out the organisation’s intention to effect ‘significant change’ over the next five years by reducing barriers to access across our entire offer. From physical alterations to the building, to an active coming to terms with our cultural heritage, to embedding inclusive practice in our workplace processes and programmes, we expect that this will be a difficult and sometimes uncomfortable journey. But, to paraphrase the words of Wellcome Collection’s new Inclusive Design Guidelines – we see inclusion as an opportunity for creativity and innovation, an opportunity to commission bold and beautiful work that creates a positive experience for all our visitors.
The development of Being Human occurred within these changes to Wellcome Collection’s vision and approach. The original Medicine Now gallery had already evolved somewhat from its initial installation (partly because of alterations to the building) and evaluation carried out at various points in its history suggested that as a space, it had increasingly lost its connection with audiences. Visitors struggled to articulate its purpose or the connections between the objects, describing it as ‘cold’ and ‘clinical’. This impression was increasingly at odds with Wellcome’s strategy, which emphasised the lived experience of health. There was also evidence that scientists did not feel it was a space for them and no longer offered any meaningful engagement with current research. These impressions came across through ten years of visitor comments and numerous evaluations of the gallery.
At the start of the project, therefore, we identified two distinct groups of superusers – visitors who were critical of Medicine Now and those who were high-priority audiences: namely, disabled people and scientists involved in medical research. We recognised that sometimes these categories would intersect but that the new gallery needed to draw on the different kinds of expertise each of these broad groups could offer. This article explores our engagement with the first of these groups of superusers, but it is important to recognise that the process we describe ran in parallel to other forms of consultation.
So what did we need to do? And was it actually possible to rethink the medical museum so it might become a space that would welcome disabled people? What were the barriers to inclusion?
To help answer these questions, we contacted Professor Richard Sandell and Professor Jocelyn Dodd at the University of Leicester’s Research Centre For Museums and Galleries (RCMG) about six months into the exhibition’s development. We asked them to help us think through this problem and set up a consultation with disabled experts to help us to explore how we could do better. We identified RCMG as partners for this work, primarily because of a project that they had recently completed called ‘Exceptional & Extraordinary: Unruly Minds and Bodies in the Museum’. This project had entailed close collaboration with a range of medical museums in order to create new commissions that centred disabled voices and experience. We were also impressed by work they had done at the Tower of London, exploring a new ethical approach to narratives of torture and capital punishment. Working with them allowed us to draw on the breadth of their experience and through them, we recruited a group of disabled experts who could help us rethink the museum from a new angle.
This angle was the social model of disability, closely associated with the work of Professor Vic Finkelstein and Professor Mike Oliver, and summarised by Shape Arts on their website in the following terms:
‘The Social Model holds that a person isn’t ‘disabled’ because of their impairment, health condition, or the ways in which they may differ from what is commonly considered the medical ‘norm’; rather it is the physical and attitudinal barriers in society – prejudice, lack of access adjustments and systemic exclusion – that disable people.’
Embracing this model meant exploring every aspect of the gallery from a perspective of access and inclusion. Over the course of the sessions, we held a series of workshops which took into account not only the design of the space but also the object selection, interpretation and messaging through press and marketing. No area was off limits and we regularly checked in with the consultants to determine whether there was anything we had missed that they wished us to engage with. Crucially, we designed the process with accountability in mind. Every time we met, we reported back on concrete changes that we had made in response to the consultants’ recommendations. Alongside this consultation, we held other consultations with groups such as Heart n Soul (a creative arts company that celebrates the talents of people with learning disabilities) and prototyped aspects of the design with different users.
Several themes emerged from these conversations.
Firstly, some tips as to what to avoid:
• The supposedly ‘detached-observer’ perspective associated with the medical gaze is not neutral. On the contrary, this was experienced as intrusive, aggressive and dehumanising.
• Representation by itself isn’t enough. It is not enough to simply include images of disabled people in the gallery. You need their work and voices.
• The hero/victim lens through which disabled people are often presented is cliched and infuriating.
• Disabled people should not be treated differently to other voices. All voices should be represented authentically and respectfully.
• Disabled experience should not be treated as something external to the museum or represented as alien to your assumed audience.
Instead, the social model of disability offers a different approach, one that tries to authentically and respectfully include disabled people and voices in the space. This approach can be summarised in these terms:
• Represent disabled people as complex people rather than as victims, heroes or spectacles of ingenuity.
• Acknowledge diverse responses to medical intervention.
• Privilege people’s lived experience in their own words.
• Explicitly recognise the wider political context of disability and the way society disables people.
• Consider the objects and design from multiple perspectives – physical accessibility, neurodiversity, hidden impairments to name but a few.
• Don’t let design be a barrier. It’s often as easy to design for inclusion, so long as you take it into account from the start of the project.
The journey we went on has helped us to create a space that is more interesting, more engaging and more respectful of difference. We have been humbled by the positive reaction it has received. Crucially, the final gallery attests to the fact that you don’t need to exclude certain audiences in the effort to reach new ones: we have had overwhelmingly positive response from scientists, from disabled people and from the public at large.
Embracing an inclusive approach needs to be an iterative process. We know we haven’t got everything right and we are looking forward to receiving continuous feedback from different users of the space and from our own rounds of evaluation. We need to remain accountable and to continue to strive to do better for all our audiences. This process does, however, represent the end of the beginning and the first permanent manifestation within Wellcome Collection of the new relationship we want to have with our visitors.
Kate Forde, Head of Exhibitions, Wellcome Collection; and Clare Barlow, Project Curator, Being Human