Telling new stories around disability

For many disabled people, cultural institutions that focus on medicine and health present a distinctly unappealing leisure prospect – the last on a very long list of places to visit. Medical museums are often presented as places of wonder and curiosity, perhaps offering a glimpse of the ghoulish or a chance to marvel at life-saving innovations. Yet the experience for many disabled people can be distinctly uncomfortable.

This potentially marks a turning point in the way that medical institutions engage with disabled people

In many medical museums, physical and human differences are presented as deviations from idealised norms. In this context, disabled people appear as less than fully human, deficient, deviant and in need of fixing. This can lead to the institutions being perceived not simply as unwelcoming or inaccessible but deeply offensive – even hate-filled – and entirely at odds with contemporary understandings of disability rights.

Challenge

Early in 2018 the Wellcome Collection approached the University of Leicester’s Research Centre for Museums and Galleries (RCMG) to explore how the two organisations might work together to address this challenge. RCMG had been working for a number of years with UK medical museums and disabled artists and activists, exploring creative new ways of re-narrating disability. The output of these collaborations – exhibitions, artworks, events and performances – demonstrated the potential for institutions to stimulate new, ethically shaped ways of thinking about disability. But they were largely temporary, leaving permanent galleries unchanged.

Excitingly, the research collaboration between the Wellcome Collection and RCMG was established around a more ambitious proposition: to help to shape a new permanent gallery (‘Being Human’, opening this week) exploring contemporary health and medicine. How might the gallery not only avoid dehumanising portrayals of disabled people, but actively challenge deeply entrenched negative perceptions of disability? What role might the Wellcome Collection play in fostering new understandings of disability that open up possibilities for respect, equality and understanding?

A collective ambition

Over 18 months, the collaboration evolved as a mutual, non-hierarchical process of exploration, dialogue and exchange. Disabled people’s views, lived experiences and perspectives were fully respected, alongside the scientific and medical perspectives that have tended to be privileged in the making of medical museums. While the project began with a discrete focus on content and interpretation, a collective ambition to bring about more fundamental change gradually emerged.

Consultation and participation processes often limit the influence of external partners by focusing on gallery content or specific co-created features within a larger whole. But here, the team began to explore how a genuine commitment to work with disabled people might have a more profound impact, influencing areas such as interpretation, marketing, front of house and live programming.

Social model

Early on, we explored the long-standing debate around different models of disability. Medicine has tended to view physical and mental impairments as deficiencies – exceptions to the rule that require intervention. This medical model has played a major part in shaping both broader attitudes and public policy.

In the 1970s these perspectives began to be challenged by a social model of disability – developed by disabled scholars, artists and activists as part of a global disability rights movement – that offered a radical critique of biomedical thinking. The social model challenges the view that physical and mental impairments are inherently problematic and necessarily require medical intervention. Disability is viewed, not as arising from bodily differences in themselves, but rather as the product of societal barriers (physical, sensory, attitudinal) and norms.

The radically different perspectives that medics and disabled people have on physical and mental differences have often been understood as irreconcilable – two vastly different ways of seeing the world. In medical museums, medical perspectives have typically been privileged in permanent exhibitions. Engagement with social model thinking has been relegated to temporary interventions – perhaps worthy of consideration, but unable to penetrate and influence fundamental attitudes.

Unexpected outcome

The collaboration between RCMG and the Wellcome Collection began from a similar starting point. But the outcome of the sustained, rich and sometimes challenging dialogue between all parties that has characterised the process has been wholly unexpected.

Rather than weaving social model perspectives into an existing narrative, the Wellcome Collection has committed itself to privileging ethical, rights-based and respectful ways of viewing human diversity throughout the whole gallery. These range from works exploring the lived experience of being HIV positive in the 'infection' section to seeds that highlight London’s diverse heritage in the section on environmental breakdown.

This potentially marks a turning point in the way that medical institutions engage with disabled people. Contrary to all our expectations, this dedication to a social model – explicitly stated in the gallery’s opening panels – has not proved to be necessarily at odds with the views of medical experts.

Alongside shaping the gallery’s narrative, the team have also explored ways of enhancing access to ‘Being Human’ for visitors with diverse needs, supporting innovative new ways of opening up experiences for all. For example, there are sculptures that are designed to be touched and smelled, including ‘5318008’ – a work by Tasha Marks of AVM Curiosities that evokes the smell of breastmilk.

We acknowledge that the gallery won’t be perfect – it’s only through sustained engagement over time that the impact on visitors can be evaluated. However, the ambition is an exciting one: to reimagine the relationship disabled people have with medical institutions and explicitly challenge the negative attitudes to difference that pervade contemporary life.

Richard Sandell is Professor of Museum Studies and Co-Director of the Research Centre for Museums and Galleries at University of Leicester.
www.le.ac.uk/rcmg

‘Being Human’ opens at Wellcome Collection on Thursday 5 September 2019. Admission is free.