Rethinking Disability Representation in Museums and Galleries Edited by Jocelyn Dodd, Richard Sandell, Debbie Jolly and Ceri Jones


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Rethinking Disability Representation in Museums and Galleries
Edited by Jocelyn Dodd, Richard Sandell, Debbie Jolly and Ceri Jones

Front cover image: Life Beyond the Label exhibition at Colchester Castle Museum

Photograph by Julian Anderson

This publication reports and reflects on Rethinking Disability Representation, a large scale, experimental project which developed new approaches to the interpretation of disability-related themes and narratives and to the representation of disabled people’s lives within museums and galleries.

Copies of this publication, and related resources, can be downloaded from
Edited by:

Jocelyn Dodd

Richard Sandell

Debbie Jolly

Ceri Jones
ISBN 13: 978 1 898489 46 7

Published by RCMG, University of Leicester, December 2008

Copyright RCMG 2008
Further copies of this publication are available from:
Research Centre for Museums and Galleries (RCMG)

Department of Museum Studies

University of Leicester

105 Princess Road East

Leicester LE1 7LG
Tel: 0116 252 3995


We are very grateful to the Heritage Lottery Fund and the National Endowment for Science, Technology and the Arts for their financial support of Rethinking Disability Representation.

Additional funding and in-kind support for the project were also provided by the University of Leicester and the nine partner museums.

RCMG would like to thank the many people involved in the project including:
All members of the project’s Think Tank; staff at the 9 partner museums (Birmingham Museum and Art Gallery, Colchester and Ipswich Museums Service, Glasgow Museums, the Imperial War Museum, London, Royal London Hospital Archives and Museum, Stamford Museum, Tyne and Wear Museums, Northampton Museum and Art Gallery and Whitby Museum); Maureen Finn, Cassie Herschel-Shorland, Siobhan Edwards; CLMG, SHAPE, Martyn Hale, Kath Landthaller, colleagues in the Department of Museum Studies; the Centre for Disability Studies, University of Leeds; University of Leicester, MA Museum Studies and Art Museum and Gallery Studies students 2007-2008; University of Leeds, MA Disability Studies students, 2007-2008.
Additional thanks to all the visitors who agreed to be interviewed, or who completed a response card in the project evaluation.


The Social Model of Disability 06
Introduction: Rethinking Disability Representation 08
Part 1 Perspectives on Disability Representation 13
Shaping Representation: the Role of Disabled People 14

Rachel Hurst

Why Does Representation Matter? 17

Jackie Gay with Mat Fraser

Advancing Museum Practice 25

Mark O’Neill

Part 2 Museum Experiments 30
Life beyond the label 31

Colchester and Ipswich Museums Service

One in Four: Exploring Experiences and Attitudes Surrounding Disability 33

Tyne and Wear Museums

Lives in Motion: Transport and Disability 35

Glasgow Museum and Transport

Behind the Shadow of Merrick 38

Royal London Hospital Archives and Museum

Daniel Lambert: An Exalted and Convivial Mind 40

Stamford Museum

Talking about…Disability and Art 42

Birmingham Museum and Art Gallery

I Stand Corrected? New Perspectives on Orthopaedic Footwear 44

Northampton Museum and Art Gallery

Conflict and Disability 46

Imperial War Museum London

A Whitby Fisherman’s Life:

‘Stumper’ Dryden through the Lens of Frank Meadow Sutcliffe 48

Whitby Museum
Part 3 Reflections on practice 50
New Ways of Seeing Collections 51

Conflict and Disability, Katie Potter and Sarah Ballard 52

I Stand Corrected?, Rebecca Shawcross 59
Framing the Project 64

One in Four, Kylea Little 65

Disabled People's Voices

Talking about Disability… Disability and Art, Liz Braby and Melissa Strauss 70

A Whitby Fisherman’s Life, Jackie Gay and Mark Edwards 79
Countering Stereotypical Representations of Disabled People 82

Daniel Lambert, Claire Jacques 83

Approaches to Interpretation 87

Lives in Motion, John Ferry 88

A Place for Debate 96

One in Four, Kylea Little 97

Challenging Visitors’ Perceptions 100

Life Beyond the Label, Sophie Weaver and Ciara Canning 101

Conflict and Disability, Katie Potter 107

Behind the Shadow of Merrick, David Hevey 115

Part 4 Visitor responses 122
General Reactions and Responses 125
Changing Attitudes Towards Disability? 137
Getting Started 149
Rethinking Disability Representation Team 153

The Social Model of Disability

The disability studies literature inevitably contains a diversity of opinions and viewpoints but there is nevertheless a consensus around certain principles and conceptual approaches to understanding disability. In particular, the social model of disability has been widely recognised as a key conceptual tool for the advancement of the rights of disabled people. The social model rejects an individualist, medicalised understanding of disability and instead locates the issue (and the need for action) not with the individual (and their impairment) but with society and the barriers which restrict and oppress disabled people. The basis for what has become the social model of disability was a document produced in 1976 by the The Union of Physically Impaired against Segregation (UPIAS) entitled the Fundamental Principles of Disability.
In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society.

There is a large body of literature discussing the emergence and significance of the social model and, whilst its contemporary relevance is increasingly debated, there nevertheless remains widespread consensus on its value as a means of articulating a progressive understanding of disability, as bound up in social context, and the implications this has for advancing the rights of disabled people. The social model of disability was taken as a starting point for Rethinking Disability Representation for framing the wide-ranging interpretive approaches used in each of the nine museum projects and repeatedly drawn upon – as the projects evolved and developed – to steer the choice of objects displayed and the tone and content of interpretive materials.





Disabled people have often been portrayed within broadcast and news media, literature, advertising and film, in negative ways which rely on a handful of demeaning and dehumanising stereotypes. The prevalence and persistence of this negative imagery as well as the paucity of representations of ‘ordinary’ disabled people can be viewed as both a symptom and cause of the lack of equality for disabled people. This issue has generated considerable discussion in the field of disability studies and inspired a range of activist initiatives from within the disabled people’s movement.

The social model of disability provides a powerful lens through which to challenge and reconfigure such negative representations by highlighting the environmental, attitudinal and social barriers that disabled people face in struggles for equality and basic human rights. Using the social model as a starting point, the Research Centre for Museums and Galleries (RCMG) at the University of Leicester initiated an ambitious action research project which set out to explore – through collaboration, experimentation and evaluation – alternative approaches to representing disability in museums and galleries. A critical feature of the project was the establishment of a ‘Think Tank’ comprised of disabled activists, artists, and cultural practitioners who played a leading role in shaping the content and tone of the different interpretive interventions that eventually appeared in nine different museums in the UK across 2007 and 2008.
The aims of the project were to:
Uncover material evidence held within wide-ranging collections that could contribute to a broader public understanding of disability

Develop narratives that draw on historical and contemporary material to engage audiences in rethinking attitudes towards disability and open up possibilities for engaging with contemporary, disability-related issues and debates

Evaluate the impact of these displays on audiences, both disabled and non-disabled

Disseminate the findings in ways which could inform mainstream practice in museums and help to develop practitioner confidence in working in these largely uncharted areas.

RCMG and the project’s Think Tank worked in partnership with a range of museums. These were of different sizes and types of governance and with different levels of experience of tackling disability issues, working with communities to co-produce interpretation and engaging visitors in debates pertaining to contemporary social issues. The resulting interventions took a variety of forms – displays, touring exhibitions, films and educational sessions – and were tremendously diverse in theme and approach. All museums were accessible and provided information in a range of formats.

Background and rationale
Rethinking Disability Representation (RDR) grew from the findings of an earlier research project, funded by an Innovation Award from the Arts and Humanities Research Board. This project, entitled Buried in the Footnotes,1 had investigated the reasons behind the paucity of disability-related narratives and representations of disabled people in museums and galleries in the UK. What material might exist in museum collections that related to disabled people’s lives and histories? Why, at a time when museums were increasingly concerned to research and present ‘hidden histories’, was disability rarely, if ever, considered?
The research identified a wealth of material in wide-ranging museum and gallery collections. However, much of this was in store, not on display. Where objects and artworks were displayed, their connection with disability was rarely made explicit or interpreted to visitors. Representations of disabled people in displays and exhibitions, though relatively few in number, most often conformed to prevalent stereotypes found in other media – in film, literature, television and charity advertising. These stereotypes included disabled people as freaks, as passive and dependent recipients of charity, care or biblical miracle cure; and as heroes who somehow transcend disability by overcoming the challenges presented by their impairments. Depictions of disabled people in everyday life were practically non-existent.

Interviews conducted with curators helped to explain this situation. Many we spoke with were open to the idea of including representations of disabled people in exhibitions and displays but voiced a set of concerns relating to how this might be achieved. Most significantly, we encountered a fear of causing offence, of making mistakes. The history of the freak-show, in particular, appeared to cast a powerful shadow over contemporary practice. In their display of objects related to disability, curators were anxious not to be seen to promote freak-show approaches through displaying ‘difference’ in ways which might encourage staring or other inappropriate forms of looking. Other display dilemmas emerged during the research which also contributed both to anxiety and inertia. Should we tell (and if so how?) the difficult stories around disability – of asylum history, industrial and war injury and mutilation, holocaust, freak-show history, people’s personal experiences of pain and distress? In what circumstances should an object’s link with disability be made explicit where it might not otherwise be obvious to the audience? How can the material in collections be interpreted in ways which reflect and incorporate perspectives and insights from disabled people themselves? The research team concluded that further work was needed to develop new ways of representing disabled people that could begin to move practice forward.

Disabled people’s voices, experience and expertise
The Think Tank of disabled activists, artists and cultural practitioners, established at the outset of the project, played a key role in the process of guiding and supporting museums in their experimental practice. This group met with staff from the nine partner museums at intensive residential sessions at the beginning, middle and towards the end of the two-year project to exchange ideas and resolve challenges as they arose. This process of collaboration was supported by further work, carried out by each museum, with disabled people at a local level. The role of the Think Tank was to offer constructive criticism, knowledge and advice to museum partners, whilst museum staff developed each of the projects drawing on their collections-knowledge and expertise in modes of display, interpretation and audience engagement.
The central importance of working with disabled people in RDR chimed with recent legislative changes in the UK. The Disability Discrimination Act (1995) followed on from legislation relating to gender and race discrimination introduced many years earlier. Whilst there are differences of opinion on how effective the Disability Discrimination Act has been in alleviating discrimination and inequality, it nevertheless marks an important development in the legislation. In December 2006 the Disability Equality Duty and the duty to produce Disability Equality Schemes with measurable impacts was brought into the legislative framework. Part of this included a duty for public-funded sectors to include disabled people and disability equality into all of their functions and policies from the outset.

These legal imperatives to actively involve disabled people (and organisations run by disabled people) in all issues that affect their lives had consistently been called for by disabled activists for many years. One of the legacies of RDR is a strengthened understanding, within the museum sector, of the importance of this process of genuine collaboration.

Ultimately, RDR set out to explore the role that museums and galleries can play in shaping and framing the conversations which visitors have about disability and difference. Taken together, the nine experimental interventions that were created seek to address the cultural invisibility of disabled people in current museum narratives and to offer alternative ways of understanding disability which challenge negative representations.
The museum staff at each of the nine partner museums, the research team at RCMG and all members of the Think Tank undertook a collaborative journey which set out to explore new ways of working to move practice forward in this largely uncharted territory. This publication contributes to a mapping of that journey by bringing together the experiences and viewpoints of those involved, reflecting on the challenges encountered and discussing the means by which these were tackled. Part 1 presents the views of disabled activist, Rachel Hurst, (a member of the Think Tank) on the importance of working collaboratively with disabled people whilst writer Jackie Gay and actor Mat Fraser consider why issues surrounding representation warrant further attention. Mark O’Neill (Head of Arts and Museums, Culture and Sport Glasgow) considers the potential significance of the project for advancing museum practice. Part 2 outlines the different interpretive interventions developed by each of the nine museum partners involved whilst in Part 3 museum practitioners reflect on some of the issues involved in bringing these to fruition. In conclusion, Part 4 reports on the findings of the evaluation carried out by RCMG to explore the different ways in which visitors engaged with the projects they encountered.
Richard Sandell

Jocelyn Dodd

Debbie Jolly

Ceri Jones

Part 1


on Disability Representation

Shaping Representation: the Role of Disabled People

Rachel Hurst

The United Nations Convention on the Rights of Disabled People, adopted on 13 December 2006, recognises the crucial importance of ‘promoting positive perceptions and greater social awareness toward disabled people’ [Article 8, 2a(ii)] in order to foster respect for the rights and dignity of disabled people. The Convention also stipulates that all public policies and programmes, particularly those concerning disability, should consult with disabled people and their representative organisations.
In the UK, the Disability Equality Duty in the Disability Discrimination Act 2005 (DDA) requires all public bodies to ensure that disabled people are treated equally in the provision of, or participation in, both services and employment. The need to eliminate discrimination, to promote greater equality of opportunity, to promote positive images and participation in public life, is also specifically referred to.
On top of these legal obligations there is a clear moral perspective. Can you imagine a project entitled Rethinking Women’s Representation in Museums and Galleries that was led by men? Traditionally excluded groups – such as women, black and ethnic minorities, children, older people and those of different faiths – are increasingly evident in images of ‘the public’, and there is a growing awareness that each group should be consulted on the content of those images. Disabled people must be part of this list; images must be included and the content debated.
Despite these broader societal developments, one of the findings from Buried in the Footnotes, the research report that preceded Rethinking Disability Representation (RDR), was that only 21% of the museums and galleries surveyed had worked directly with disabled people, whilst 52% had displays that included disabled people.

RCMG were keen to ensure the inclusion of disabled people from the inception of the project. Firstly, a Think Tank was convened, with a brief to assist each of the nine partner museums in shaping their exhibitions, advise on difficult issues and encourage positive, creative and empowering images. The Think Tank members – with disabled people in the majority – were professionals with specific expertise relevant to the project.

An initial meeting between RCMG and the Think Tank immediately demonstrated the need for flexible ways of working to ensure the full involvement of disabled people in the project. It was clarified that there were disabled staff on the RCMG team, and that, ideally, consultation with local disabled users of museums and galleries would be an integral part of each project. However it was recognised that museums would be at different stages in their understanding of, and involvement with, issues of disability representation and the institutional challenges involved; therefore a complex and sensitive approach needed to be taken to the project as a whole.
A three day residential meeting between the Think Tank and partner museums followed. This was a great opportunity to review initial ideas and to discuss issues and challenges that were common to all. Most of the museums had complied with requirements under the DDA for physical accessibility but the more rigorous access requirements for visually and hearing impaired people and for those with learning disabilities often needed considerable development in both understanding and implementation.
Additionally, museums’ understanding of definitions of disability and the implications of the social model of disability were varied and challenging, especially for those museums holding medical exhibits or those emphasising one person and their impairment.
The partners were aware of the need for consultation with disabled people but did not necessarily have contacts amongst disabled professionals who had studied disability imagery and articulated the social model of disability in relation to their own identity and their full human rights. The Think Tank bridged this gap and gave museums the confidence to overcome institutional barriers and fears.

With regard to local consultation, some of the museums had already established formal contacts with groups of disabled people. Colchester and Ipswich Museums Service employed a disabled access officer and had strong links with disabled local people. Tyne and Wear Museums employed several disabled members of staff and had a culture of consultation.

Think Tank members Rachel Hurst and David Hevey visited many of the galleries and museums along with the RCMG team to advise on the progression of specific ideas and plans. We were also able to broaden the perspective of museum staff by alerting them to relevant contacts and supportive material devised by disabled people.
A final residential meeting to evaluate the project illustrated the importance of the inclusion of disabled people in the process. For example Birmingham Museum and Art Gallery felt that the disabled artists involved in their project had brought in a ‘critical and engaging perspective’ and hoped to develop more work with them in the future. Glasgow Museum of Transport used images showing the vital role of disability activism in the struggle for more accessible transport; Stamford Museum gained the confidence to shape interpretation of the images and objects held by the museum; and the Royal London Hospital Archives and Museum produced an emotive video by David Hevey on Merrick, the ‘Elephant Man’, using the experiences of people with disfigurements to illustrate disabling attitudes towards them.

We live in a world which is slowly becoming aware of the social construction of disability. The scales are falling – or being nudged – from our eyes, disabled people are full human beings with rights, and one corollary of this is that disabled people must be involved in all matters that concern them; debating, discussing, making choices and taking control over their own lives, and images of those lives. This has not been easy work for any of parties involved.

Museum partners have had to relinquish some of their institutional and individual power and tackle personal attitudes they may have wished to avoid. All the museums have met these challenges with creativity and commitment. Now the important message – and the involvement of disabled people in that message – can be widely disseminated. As Helen Keller said: “Ideas make the world we live in, and impressions furnish ideas.” Disabled people’s involvement in RDR has ensured that the impressions gained from imagery are based on real understanding and experience.

Why Does Representation Matter?

Jackie Gay and Mat Fraser

‘Representation (noun)… the description or portrayal of someone or something in a particular way or as being of a certain nature’

The New Oxford Dictionary of English
Representation is a tricky business. We all wish to see ourselves, or aspects of ourselves in the full range of cultural media: film, television, radio, theatre, literature, advertising, dance, art, museums. Art and culture are two of the ways we attempt to understand our humanity, so naturally we want to be part of that, to participate and to recognise ourselves in the portrayals. However, phrases such as ‘a certain nature’ or representation in a ‘particular way’ have obvious pitfalls. Everyone will have experienced irritation or frustration when encountering cultural stereotyping: ‘chavs’, women, Brummies or Scousers – we all have our own examples; and many of us will have felt excluded by certain art forms because our class, culture, or ethnicity is missing or poorly portrayed. Representation is deeply personal and individual and our relationship with how we are represented on the ‘big screen’ of cultural life is dynamic – changing as we grow personally and in conjunction with broad developments in society.

So now try to map these complications on to the cultural representation – both historical and contemporary – of disabled people. We were even there, in the past? Are we now? Disabled people throughout the world are engaged with a long and complicated struggle with the way we are portrayed and the meanings attached to these portrayals that include disability as stigma, as a sign of a damaged soul, as being less than human, as dependent, weak, sexless, valueless. Oh yes, and we’re invisible, or should make ourselves so. This may appear an extreme interpretation in a culture where (now) a short actor can play a teacher in EastEnders and amputee runner Oscar Pistorius thrills us in the Nike adverts but many societies, including ours, have held long-standing prejudices against the disabled and in many parts of the world the basic rights of disabled people still have to be addressed. Representation can reinforce these prejudices or help tackle them; visibility matters and so does positive representation – in China the 2008 Paralympics is seen as an opportunity to change attitudes. Swimming coach Li Ke-qiang took silver and bronze medals for China in Athens. He says that when the Chinese public see disabled athletes succeed in the Olympics, that might really change their image of disabled people. “In the past… people despised the disabled. They thought they were all beggars, just asking for money.” 2

Oh yes, and we’re beggars, blighted by poverty. Think of Dickens, Rembrandt’s paintings, de Maupassant’s beggar ‘always limping… hunger gnawing at his innards’3, any number of cartoons and roadside ballads.

So, representation is both a highly personal and widely significant aspect of culture. When considering how best to approach writing this piece I thought that the experiences and insights of individuals would powerfully illustrate the issues: real people equals real lives. At the launch of the RDR project in 2006 myself and actor Mat Fraser were asked to talk about our personal perspectives on our artistic practice and its development within the broad cultural framework. Mat told of his experiences of growing up as the son of actors, doing line runs and sitting in on rehearsals as a youngster, and how the feel, smell and ways of the theatre felt natural. “It never occurred to me I wouldn’t be wanted when I came back to [acting] as an adult,” he said, until:

“I went to the auditions for the school play when I was 17, and as I was doing my monologue, I noticed the perplexed, almost terrified, fixed smile of my supportive English teacher as he wrangled with his and society’s mindset – that disabled people don’t belong on the stage – versus his empathy for a favoured pupil.”
Mat was ‘instantaneously deterred’ from an acting career as a result, knowing that audience embarrassment is the death of entertainment. This was 1978 and there were no disabled actors to be seen in British theatre or screen, apart from Sandy on Crossroads.4
Mat became a drummer for 16 years, and the rock and roll lifestyle enabled him to ignore and sidestep his impairment. It still nagged, however, that it had been OK, somehow, to flatly refuse him a part in the school play. In 1994, he went to see Graeae Theatre Company, the all-disabled theatre company that he’d heard about but avoided, and witnessed their seminal production of Ubu Roi and his life took another dramatic turn:
“Watching a largely non-disabled audience laugh, groan and generally thrill to the bawdy antics of Jamie Beddard [an actor with cerebral palsy] completely revolutionised the way I perceived disabled actors, disability theatre, and my future.”
Representation – seeing ourselves in cultural forms – matters; it changes people’s lives.
Mat auditioned for Graeae and a successful career in disability arts followed. He had an agent, a track record and growing confidence and determination. Time to tackle the mainstream. His agent quickly arranged castings with directors in theatre, TV and film.

“Then, reality bit my ass. The pleasant assurances from well-meaning but naive casting directors – well, either that or they were lying – faded in my memory as no work came along. The naivety of my expectations – a level playing field – came back to taunt me as I realised that I was just NOT going to get mainstream stage work.”

A few years later, Mat appeared in an episode of Doctors, and had a small role in a docu-drama as a social worker, the only roles he’d ever played where his impairment wasn’t specific to the character. The one really good lead role he’s had was in a BBC 2 drama, Etylam, made possible by disabled producer Ewan Marshall collaring the Head of Drama and complaining about lack of representation.
Mat has engaged with the battle to participate equally in mainstream culture head on, and the situation is slowly changing. Holby City features an anaesthetist who is a wheelchair user; but this can be set against endless ‘freak’ documentaries about the boy whose skin fell off. As Mat says:
“We need to see dramas that show how we were part of history, to have our characters reclaimed and given their proper status… to see scenarios of contemporary inclusive living, and all of this needs to be written by someone who has knowledge of our experiences, and finally of course the parts need to be played by disabled actors, who can act.”

In 2003 the BBC, the Broadcasting Standards Commission (BSC) and Independent Television Commission (ITC) commissioned a report Disabling Prejudice to examine attitudes towards disability, and the representation of disability on television, by both disabled and non-disabled viewers, and by broadcasting-industry professionals. The report confirms Mat’s personal experience of caution within the industry. Professionals were concerned about perceived audience prejudices, ratings and other possible constraints including the assumption that viewers expected actors and presenters to be traditionally good-looking, and how audiences might respond to more ‘severely’ disabled actors or presenters. Content analysis of the representation also highlighted problems: disability was rarely portrayed as incidental or everyday, and representations were highly clustered among the more easily recognised forms. We don’t appear on cookery or DIY programmes, or gameshows; the programmes with big audiences where incidental occurrences could neatly undermine stereotypes. As one respondent quoted in the report says: ‘I’d really like to be on The Weakest Link to show what knowledge disabled people have.’5

My own experience is different, but just as illustrative. Mat was born with his impairment whereas I lost my leg above the knee in a car accident in Africa at the age of 30. Everything changed for me, at that one specific moment. The leg was ripped right off – I knew immediately it had gone forever and despite all we hear about grafting pigs’ ears on to mice, we are nowhere near to successfully re-growing or replacing human limbs. Prior to my accident my experience of disabled people was minimal, but subconsciously I must have been aware of their (and since that moment ‘our’) lack of status and visibility because I clearly felt myself sliding irrevocably down a ladder; the ladder of opportunity, status, power, attractiveness, control, right down into a murky pit which I knew nothing about and which I had no means to orientate myself within. Able-bodied people know, perhaps not overtly, that disability means, or can mean, poverty, struggle, pain, a lack of value. They also know that physical deformity or difference is equated with mental, social and sexual ‘inadequacy’ and even criminal tendencies, and have a deep-seated anxiety that we, given the chance, will take our terrible revenge for the way we’ve been treated. In those early months I felt that if I had any manners I should retire from the world and hide myself away forever.

It wasn’t long before I started to wonder where these ideas had come from. ‘I’, the essential me, didn’t feel any different, but it was clear from the start that I was perceived differently by society. On one occasion I went to a herbalist because I hoped he might be able to help with recurring skin issues on my stump. This man – who was a middle-class, middle-aged, liberal, New Age type – took a cursory look at my skin and then bombarded me with questions about my accident. I ignored them, and told him instead that I was a writer and had just published my first novel. ‘How marvellous!’ he said. ‘You can go through all that and then write a book!’ I insisted that the book was a work of fiction, not a self-help manual or autobiographical ‘triumph over tragedy’ piece, that the accident had not affected my brain, I had a respectable publisher and the novel had garnered favourable reviews, but he wouldn’t – perhaps couldn’t – hear what I was saying and smiled patronisingly – literally saying ‘ahhh’ and patting me on the shoulder.

I had to find out what all this was about, where these assumptions had come from, and as a writer I naturally started with research into representations of disability in literature. In children’s literature writers are fond of miracle cures and ‘second fiddle’ stories, where the disabled character is an inspiration to the main character. Heidi6 fits both bills. Clara is an ‘invalid’, dependent and resigned to her status as a victim, delighted by bright, lively Heidi from the mountains. When Clara visits the mountain she is encouraged to stand by Grandfather, and then, when Peter the goatherd jealously steals her wheelchair she ‘ventured one step upon the ground and then another’. ‘You have made the effort and you have won,’ says Grandfather. She is cured miraculously by ‘God’s sunshine and mountain air.’ What message does this story give? (that disabled people don’t try, that a bit of effort and some mountain air could sort everything out). In What Katy Did,7 Katy falls off the swing and injures her back. The injury (which turns out to be temporary) is treated as a lesson in life. Katy has to learn the Lesson of Patience, the Lesson of Cheerfulness, the Lesson of Making the Best of Things, the Lesson of Neatness… and the story includes this memorable line, ‘A sick woman who isn’t neat is a disagreeable object.’8

In adult fiction, there have been attempts to categorize representations of disabled people,9 for example the demonic cripple (Richard III, Captain Ahab) who is warped by his deformity; the Charity Cripple (Tiny Tim) an angelic victim; the Realistic Cripple, whose disability is neither singular nor significant; and the Survivor Cripple who triumphs against his or her misfortune. Another common representation is the disabled person ‘trapped’ – not only in their wheelchair – but also as the physical embodiment of other problems, human metaphors for dependency or vulnerability.

In film, it is still common for disabled people to be portrayed as monsters and/or criminal – expressing to varying degrees the notion that disability involves the loss of an essential part of one’s humanity. Think how many villains in films are hunchbacks or wheelchair users or facially scarred. In contrast, the Survivor Cripple is an image for our times. Individual grit and determination against adversity is used to appeal and inspire. The wounded person is still an outsider but has a role in boosting society’s feel-good factor; s/he is the new hero, the super-crip, and the experience of disability is individualised and thus distanced from the ‘normal’ world.
In my own writing my concern is with creating believable, faceted characters who may or may not have a disability. Incidental occurrence and individual complexity are my bywords. My characters may be disabled but this is not always the focus of the story and is certainly not all that is going on in their lives. As my own experience shows, we have inherited a deadening weight of notions about what disability signifies and these notions will not vanish in a puff of smoke even if I did get on The Weakest Link. The struggle is long, varied and difficult but the essence of the issue is that the way disabled people are portrayed, in any type of medium, or setting, matters. It affects people’s lives, and resisting, avoiding or challenging the deeply embedded stereotypes is difficult, important work which can be approached both on an individual and collective basis. We need to tackle the difficult question of how change happens, and the best ways to achieve results over time.

So where does RDR fit into this picture? Along with seeing ourselves represented in film, television and other cultural media, we need to understand our history and our place in the development of the society we now live in. Museums and heritage sites play a central role in constructing social and national identities, and over the last few decades museums in many parts of the world have become increasingly concerned with the challenges of representing experiences and histories outside the ‘norm’. Earlier research carried out by the University of Leicester identified that disabled people were either invisible or, to a large extent, stereotyped within museums, and many challenges were revealed, including controversial material held in museum stores. This material tells our stories, but the profession had similar concerns to their colleagues in television – what would the visitors/viewers think?

The project was designed to generate a greater understanding of the ways in which museums can engage with potentially challenging topics and we hope that the project’s most significant, long-term impact will be to act as catalyst and resource for change within the museum and heritage sector.
The significance of this cannot be underestimated. Change has started, but it is slow to spread and has inherent difficulties especially when we are dealing with deep-rooted attitudes, perceptions, preconceptions and in some cases, outright fear. Cultural organisations and bureaucracies can be cautious, reluctant to tackle ‘difficult’ subjects. But the benefits of rounded, nuanced representation cannot be underestimated. Mat Fraser tells of being approached by a young lad who asked for his autograph. The boy, who was also disabled, had seen Mat’s work on TV and treated him like any other celebrity.
“It was huge to me because I was reminded that without any examples of one’s self on TV or in public view, you can feel different, unwanted, weird, unattractive and undeserving … That was my experience as I grew up, nothing on my life, or my experience.”

RDR is also a timely project. Society has progressed and there is more visibility and integration for disabled people, although this is partial and can be tokenistic. A recent DEMOS report10 argues that while many legal and institutional barriers to integration have been tackled, the necessary cultural change is yet to come, and that although there is a lot Government can do to change people’s attitude to disabled people, they can’t do it alone. How we look at, how we perceive disability is crucial to tackling stereotypes, and museums are just one of the rungs on the ladder that disabled people need to help them climb out of the institutions, the murky pits, the barriers erected by society and sometimes their own families and cultures, to realise their full potential for the benefit of all society. Changing perceptions changes lives and all disabled people know this. As Tara Flood, paralympic gold medallist says:
“I had a sudden realization that everything that’s happened was because of how people look at impairment – as different, less acceptable.”11
RDR challenges this viewpoint with real stories from history and contemporary experience.
Advancing Museum Practice

Mark O’Neill

Anyone who has worked in public institutions in the past twenty or thirty years has learned a great deal about disability. For some this was in response to their own commitment to improving access, for others it was a response to pressure from activists, charities and funding agencies, such as the Heritage Lottery Fund; and everyone had to comply with new legal requirements. This process revealed that, contrary to what might have been expected in expert institutions, the institutional learning involved was often difficult for museums. For museums did not have to accumulate or assimilate new information, but learn to see the world in new ways and think about displays and collections within a new paradigm – the relationship between museums and their (potential) audiences. The sequence of learning started with the relatively simple idea of disabled access, i.e. enabling people in wheelchairs to enter buildings. Some institutions have never gone beyond this. The next, crucial, stage was the transition from seeing the person in the wheelchair as an access problem to seeing them as a person with an impairment for whom the museum had created an access problem. Museums had to learn to take responsibility for the problems created by steps even if the physical environment dated back many decades. From this starting point, museums began to learn about other disabilities, other impairments, including much less visible disabilities, learning disabilities and mental health problems. This was part of a wider process of learning about, and responding to, audiences in all their variety and complexity, a process which once begun can never end. Looking back on this process can teach us many lessons about how museums do and don’t learn. The indications are that we need new processes for institutional learning in museums, of which Rethinking Disability Representation (RDR) is a powerful and significant example.

Learning about the issues of access for disabled people may have appeared to museum staff to be about sympathy or, in the words of the great satirical songwriter, Tom Lehrer, ‘being nice to people who are inferior to you’. It has however always been about the obligations of public institutions in a democracy, obligations to provide services that reflect the realities of people’s lives. Democratising public institutions is never complete and each new stage involves changing patterns of thought and work which can be difficult, even for those who are really committed. Democratic gains may appear obvious and quickly be taken for granted – with self-congratulatory hindsight we wonder how people could have opposed the abolition of slavery, the introduction of universal male suffrage, the granting of votes to women, the old age pension. But at each of these turning points, the ‘next stage’ was not so obvious. Every individual (including the slaves and the disenfranchised) had to rethink the assumptions they were brought up with, while those with power had to make choices that many in their social group resisted. And all of this for changes whose consequences were, by definition, unknown. Two hundred years of humane and democratic reform has been accompanied by unintended and counter-productive consequences – from welfare dependency to advertising campaigns which glamorise drug consumption– and this has made identifying the next stage of democratisation more difficult and resistance easier. In the face of the mockery of ‘political correctness gone mad’ and libertarian arguments as well as genuine difficulties of analysis, the next step only becomes obvious after it has been taken and seen to work.

We are now justifiably wary of sympathy as a motivation for democratisation; however, the capacity for empathy has been and remains an important element of discovering the next stage of democratisation. To be able to imagine that other people’s experience is different from yours is an essential trait of anyone working to provide a public service. Recognising that other people may experience the world differently and speculating in imagination what that might be like is, however, only the first step. No one can imagine another’s life well enough to develop services for them without involving them directly in that development. This fundamental principle again may appear obvious, but at each time the issue has emerged, staff have felt threatened, that their ‘professional’ judgement and status is in question. It can also appear as a specific threat to museum workers of all disciplines – curators, conservators, educators and front of house staff. Learning more about an artist, an object, learning new skills or more about a target audience within your current framework is exciting and can be difficult, but essentially it means learning more of the same. As knowledge-workers, staff experience an intimate link between their personal identity and the work they do. To be welcoming to visitors, to present the results of your research or conservation treatment in an exhibition involves elements of yourself. This sense of personal engagement is tied up with a sense of (professional) service – to the discipline, to the public, to posterity and the wider society. But it is also tied up with self-esteem, with being an expert, perhaps with being a member of an elite or high status group. Even, or perhaps especially, for staff who embark on democratisation projects and direct learning from the public with enthusiasm and goodwill, the process may reveal gaps in knowledge, and expose some elements of the self to the difficulties of realising that previous assumptions may have been naive, misguided or even prejudiced. True empathy means being aware of the limits of empathy and the need to learn from witnesses. Applied to one’s profession it means emotional as well as cognitive learning.

As we move beyond the simplistic understanding that disability equals wheelchairs and access equals ramps, and engage with impairments that are not so visible (and which do not give the illusion of being easy to understand) we face a huge increase in the complexity of how we understand visitors. Learning how the lives of people with physical and mental impairments are affected by institutions providing services requires an in-depth exploration of how those services are experienced and how they need to be modified to be genuinely available to potential users. The need for awareness and the complexity of issues multiply when the question of representation of disabled people’s lives within museums is addressed. In a society pervaded by stereotypes and unrepresentative images, it is virtually impossible not to absorb the prevailing perceptions and attitudes. The result of this is that in arenas where society is depicted (television, radio, film, newspapers, magazines, advertisements – and museums) most minority groups have been invisible. Where representation has occurred the depictions have been stereotyped or clichéd. Changing this involves anxieties about ‘getting it wrong’, along with a need to overcome resistance – often expressed as opposition to ‘tokenism’ (but often a block to any first step). RDR demonstrated two important things. The first is that there are ways of greatly reducing the risk of ‘getting it wrong’. The second is that ‘getting it wrong’ is part of the expert paradigm in which prestige is based on accurate information. The democratising paradigm recognises that in many situations it is difficult if not impossible to get a right answer and the important thing is for the museum to engage, consult, act and learn.

While the point of the exercise is service to the public and not the internal intellectual and emotional difficulties faced by museums during the learning process, it is vital that these issues are addressed. Otherwise defensiveness, blind spots and poor awareness can keep barriers to services in place. RDR set out to improve services to, and the representation of, disabled people in museums by seeking to create a process that would support organizational learning. Each of the key ingredients of RDR contributed to this process. The individual museums were able to create projects which were most relevant to their collections and target audiences, but also worked in parallel so that museums were able to learn from each other. While most museum staff have colleagues and networks they can draw on, the formal sharing of experience in developing and implementing their projects meant that many of the isolating effects of learning new ways of seeing were greatly reduced. The visits by University of Leicester staff and some of the Think Tank members to individual projects enabled bespoke detailed advice (and encouragement) to be provided in-between meetings.
The Think Tank had both disabled and non-disabled members with a range of expertise in representing disabled people and of communication about disability. Feedback to the projects at each stage helped the projects focus and realise their aims, but perhaps the Think Tank’s most important function was supporting the teams in developing their confidence in relation to the authority of the museum vis-à-vis consultation processes. This can be an especially troubling issue for novices in public engagement, where goodwill and a desire to listen can lead to a sense of being overwhelmed with contradictory advice, or to community partners being disempowered by being expected to take on roles which are properly the museum’s. Individual and group consultees are experts in their own experience and on how they want to be represented in displays, but the museum is the expert on communication with the public. Even in an exhibition which enables a group to represent itself in its own terms, the museum, as a publicly funded institution representing society, must take responsibility for the communication of the display and, for example, ensure that the questions that the public would expect to be asked are raised. This is a very different kind of authority from that derived from the expertise of the curator or the education officer and is something that all the participants in RDR had to explore. This understanding also reinforced one of the key points learned by anyone who has engaged with disability seriously over recent decades – that any service improvements put in place for disabled people improve things for all visitors. This is true not just in terms of specifics (labels and signs that are easier for the visually impaired to read work better for all visitors), but of a more responsive and nuanced understanding of visitors in general. It is remarkable in how many museums Victorian assumptions about human psychology linger so that their imagined visitor is a solitary male who passively receives impressions and information and whose motivation to visit is a pure desire for aesthetic experiences or learning new information. The RDR project made clear the importance of increased awareness of and respect for visitors as complex, active human beings with a wide range of intellectual, physical, emotional and social attributes, needs and motivations to visit museums. While this recognition does not reduce museums’ authority as expert institutions with responsibilities to disciplinary rigour, it does require them to share authority with and learn from visitors in a joint project of creating meaningful experiences.

RDR came to a conclusion just prior to the publication of McMaster Review: Supporting excellence in the arts – from measurement to judgement.12 Many museum professionals would agree with the report’s critique of excessively detailed targets and micromanagement by Government of museums, but the document completely fails to offer an alternative process of accountability, and as such is little more than a bid for professional autonomy, disguised as a commitment to quality. It seems a bit lame for a document celebrating intellectual excellence to claim that it is too difficult for cultural organisations to produce high quality work at the same time as democratising their service by removing barriers to participation in a systematic and planned way. In 2008 even the most powerful professions (including the law and medicine, shaken by major scandals which have made the public less trusting of experts) are working hard to demonstrate how they sustain the highest level of expertise and are simultaneously democratising their relationships with their clients and society as a whole. RDR demonstrates a different way forward for institutions, a different model of excellence in which the cultural expertise of the staff is still vital but is combined with a process of considering the realities of people who have had different life experiences from those of the staff when planning services. RDR represents a genuine step forward in democratising cultural institutions. To take this step museums need commitment, intelligence, maturity and above all courage – the courage to overcome institutional complacency and defensiveness and see themselves through the eyes of others, and the courage to change in response to what they learn about themselves and the world.

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