What are you looking at?

The story of Joseph Merrick, born in 1862 and so disfigured by disease that he was labelled "the Elephant Man", is part of modern English history and a major draw for visitors to the Royal London Hospital Museum. The collection includes many Merrick-related artefacts from his time as an in-patient, including the famous one-eyed mask.

Reinterpreting such a well-known figure was always going to be a challenge, but a new short film abandons the traditional approaches of tragic fairground sideshow or medical study and tackles the story from an alternative perspective.

Behind the Shadow of Merrick features people with facial disfigurements and severe disabilities discussing the man and making connections between his treatment as a spectacle and their own experiences of dealing with hostility, social isolation and of being "public property".

With its very personal insights into disability, the film is sometimes painful to watch, acknowledges assistant archivist Kate Richardson, who worked on the project with archivist Jonathan Evans and film director David Hevey.

"I guess the idea was to shock a little," she says. "And it does tackle issues that we don't really display at the museum otherwise. It has certainly got us thinking about taking a much more modern approach to disability issues."

The film, a 12-minute version of which will be available for visitors to view at the museum, is one of nine projects, both temporary and permanent, by museums in England and Scotland put together for Rethinking Disability Representation (RDR), an initiative led by Jocelyn Dodd and Richard Sandell of Leicester University's museum studies department.

The project is encouraging curators to explore disability in a way that challenges stereotypes. It follows up Leicester's 2004 research, Buried in the Footnotes, which excavated portrayals of disability tucked away in museum collections.

The RDR project had some hurdles to clear. Fear of causing offence is a major barrier to embarking on anything to do with disability representation, as the 2004 research showed, Dodd points out.

"[Curators] were frightened of the language and the context, so, to them, the benefit of putting on displays on a disability theme was outweighed by the fear of getting it wrong," she says.

And unlike other minority groups, disabled people do not have a clearly defined community, therefore museum staff can't easily identify ways of approaching them.

There's a further curatorial challenge around the impact that images of amputees, people with physical abnormalities or other disfigurements might have on the audience. Fear of shocking or alarming them is one aspect, but alongside it, too, is the fear of encouraging voyeurism.

"That's the particular disability dilemma: how do you display this material without creating a freak show?" asks Richard Sandell. "But the Think Tank was very keen on this. They said we have to show pain and disability and disfigurement and loss."

The Think Tank is a group of disability campaigners and artists, cultural practitioners and museum representatives convened to advise participants in the RDR project. They gave guidance on, among other things, negotiating a way through the politics of the disability world, how to go about consulting disabled people and generally understanding the social model of disability.

Rachel Hurst, chairwoman of the Think Tank and director of campaign group Disability Awareness in Action, says she is delighted by the results of the project, but agrees it was initially a struggle for some museums to grasp how their thinking needed to change.

"I think it was a very difficult [proposition] for some of them," she says. "If you start to recognise disability as an equality issue, there's a lot to think about in terms of your own attitudes. Even then, however much the institution may want to change, you can't do it unless the individuals want to change and understand it.

"I also think they weren't terribly chuffed at having a band of disabled people telling them things. We weren't playing our usual role of being quiet, and I'm very bossy, so I think that was a hurdle for them to jump over, but they did it with enormous grace."

But she rejects the research team's conclusion that the reason more museums have not embraced disability as a theme is that they are terrified of falling into some politically incorrect language trap.

"Fear of getting it wrong is just an excuse because they don't really want to see disability as an equality issue in the same way as gender or race," Hurst argues. "It's very difficult for them because it really does change their habits of a lifetime."

It's unclear how far the projects, which have opened over the past year, have sparked a rethink among visitors. Sandell and Dodd are evaluating feedback from each museum and, generally, visitors are expressing support, says Sandell. "Although we are not claiming that people go in with one set of views and come out with another," he adds.

A report on the project, due this summer, will contain a number of critical success factors against which other museums will be able to assess any similar projects. Collections management specialist MDA has also expressed an interest in incorporating recognition of relevance to disability into its work on standards.

The RDR project, co-funded by Leicester, the participating museums, the Heritage Lottery Fund and the National Endowment for Science, Technology and the Arts, has come at a time when government priorities for culture may be shifting, in light of the McMaster report, away from widening access and participation - which is where "disability" normally sits - to "excellence". What impact could it have on how new thinking developed in RDR is taken up?

"For years, some have pitted quality against inclusion, but in our eyes this is an entirely false opposition," says Sandell. "The most powerful initiatives which engage audiences in debates around contemporary issues or which experiment with new, socially purposeful approaches to interpretation are those which refuse to compromise on quality."

The project pushed the museums to do "really high quality interpretation, to trial new approaches for their organisations and extend the way in which they had previously thought about communicating with diverse audiences," Sandell adds. "It's a firm rebuttal to that idea about quality versus inclusion."

Imperial War Museum: The Guinea Pig Club

The Guinea Pig Club was a group of badly injured second world war airmen whose lives were transformed by the work of pioneering plastic surgeon Sir Archie McIndoe. Their story is the basis of one of a series of history workshops for secondary schools devised by the Imperial War Museum's education team for the Rethinking Disability Representation project.

Students are introduced to the life of Jack Toper, whose experiences during and after the war are told through archive film and photographs, medical records and hands-on activities, including inspections of an airman's kit and a Lancaster bomber.

Toper was just 21 when he was badly burned in a plane crash and became a patient of McIndoe at the Queen Victoria Hospital in East Grinstead and a member of the Guinea Pig Club, a social network set up to support airmen as they recovered from operations.

Psychology was just as important as surgery to McIndoe, whose aim was to build enough confidence in his charges to enable them to lead normal lives; to that end, he supplied beer in the wards to create a relaxed atmosphere, allowed the men to wear their uniforms rather than convalescent clothing and encouraged them to mingle with the residents of East Grinstead, where enlightened attitudes led to its reputation as "the town that didn't stare".

"We have a lot of material relating to the experiences of people with disabilities because of the nature of war," says Katie Potter from the IWM. "We now aim to tell stories we haven't been able to explore previously, such as what happened to soldiers when they came home from the trenches."