The Lancet: Exceptional and extraordinary artists

JUN 04 2016

When he attended a school for deaf children in the 1970s Mark Smith had to use sign language in secret to communicate with his friends. At the time, he had no idea why sign language was taboo. But thanks to a pioneering project that has brought artists together with medical museums in the  UK, he discovered that an 1880 international congress in Milan decreed that sign language should be banned in schools to force deaf children to integrate.

The conference is one of the forgotten tales from history that dancer and choreographer Smith, founder of Deaf Men Dancing, has interpreted in a fusion of dance, theatre, and sign language as part of the Exceptional & Extraordinary project. The initiative invited four artists—Smith plus playwright Julie McNamara, film-maker David Hevey, and comedian Francesca Martinez— to explore the collections of eight museums in the UK to create art which challenges negative ideas of disability.

Hevey’s film Fight for Life examines how people with disabilities today are affected by biomedical decisions and austerity cuts, while Martinez’s performance Wobbly Manifesto challenges audiences to accept diversity. The works will tour the partner museums this month and also be shown to students at Leicester Medical School.

Richard Sandell runs the Exceptional & Extraordinary project with Jocelyn Dodd at the University of Leicester’s Research Centre for Museums and Galleries. He argues that “medical museums have traditionally shown disability as a deficiency that needs fixing which clashes with the contemporary view of disability pride which has grown out of the disability rights movement. They have been operating in the shadow of the freak show.” Dodd explains that their project “aims to stimulate debate—among doctors as well as the public—about medicalised perspectives of disability using humour and live art”.

Smith has found the project fascinating: “I have discovered so much about the history of deafness.” He was shocked at the number of soldiers made deaf by cannon and guns in World War 1. “I feel it is my responsibility to retell the stories for the next generation”, he says. He was intrigued to find   artifacts too, such as Queen Victoria’s silver ear trumpet in the Thackray Medical Museum, in Leeds, and cumbersome box hearing aids like the one he wore clamped to his chest as a child. The work he has created, Let Us Tell You A Story, incorporates replica hearing aids and trumpets to tell five  stories inspired by the museum collections.

Julie McNamara, who describes herself as “a mad woman made good”, has also reclaimed forgotten history for her play Hold the Hearse! “I have always begged, stolen, and borrowed stories from museums”, she says. When she met the curators of the museums involved she asked each of them two questions: what would they crawl on hands and knees to save in a fi re and what item in the hidden collections most disturbed them. The replies fed her time-slip tale that meshes stories from the Hunterian Museum, the Bethlem Museum of the Mind, and the Langdon Down Museum of Learning Disability.

In her play, McNamara takes the role of Maudlin Mary who meets Walter Riddle, played by Eden Webber, in the house of 18th-century surgeon John Hunter. Mary wants to reclaim the bones of her child which have been preserved in Hunter’s collection. The story has a personal resonance for McNamara because an older sister was born with anencephaly in 1958. At the time doctors would not let her mother see the baby, who died, describing her as “a monstrous birth”. Having herself spent years “in and out” of psychiatric hospitals, McNamara says: “I hope people, especially doctors, will come away from the play with questions about current attitudes towards mental health but I also hope they will have fun.” She adds: “I write with a bawdy humour.”

Wendy Moore

Dates and information about Hold the Hearse!

This article first appeared on 4 June 2016 in The Lancet


The Big Issue North Blog: Julie McNamara, Hold the Hearse!

JUN 06 2016

Three weeks into rehearsal and I’ve spent most of my time pinned to a specimen jar in one of the zaniest, most challenging stories I’ve presented. Hold the Hearse is my provocative response to investigations into the public and hidden collections of partner museums in Exceptional and Extraordinary.

Following Mat Fraser’s award-winning commission Cabinet of Curiosities, which that toured UK museums in 2015, Exceptional & Extraordinary invited four artists – dance company Deaf Men Dancing led by choreographer Mark Smith, film-maker David Hevey, comedian Francesca Martinez, and me – I’m an artist and playwright – to explore behind the scenes of eight of the UK’s most renowned museums with medical collections – including the Thackray Medical Museum in Leeds. Initiated and led by the Research Centre for Museums and Galleries (RCMG) at the University of Leicester, Exceptional and Extraordinary is a collaborative project with experts in medical history, disability and museums.

I was 11 when I first visited a museum. I was disruptive in class and couldn’t sit still. So I was given a sketchpad and pencils, and packed off to Lady Lever Art Gallery over the road. I spent the afternoon mesmerized by a statue of Kuan Yin, the Goddess of Mercy and the embodiment of compassion. I was just entranced. Beneath the statue it simply said: “She who sits and waits.” So I did.

My work continues to draw upon lost voices in museum collections and archives clamouring to be heard. Crossings was a story about slavery that weaves three women’s voices across three time zones and continents. It began with a story I found on the walls of Liverpool’s International Slavery Museum and then rolled with further snippets from Te PaPa and Petone Settlers Museums in New Zealand.

I suspect Hold the Hearse might ruffle some feathers. What I have to say is not easy to hear. There are huge dilemmas at the heart of museum culture that need addressing if disabled and deaf people are to become central voices.


Pullen’s giant: imposing power

As a survivor of the psychiatric system I know something about being silenced. This shapes the work I make and the work I’m drawn to. Of all the objects in the collections, I fell in love with Pullen’s Giant. Pullen was described as an idiot savant – a label I detest. He speaks to me as a quiet man with extraordinary ideas. His Giant is an imposing and militaristic embodiment of power that he could climb inside and manipulate from within. A little like me with this show.

In making the show, I chose two stories from the archives at Bethlem and Langdon Down Museums to develop the two characters in the piece. Mad Mary (lunatic, 40, cause of insanity: grief at loss of a child) and Walter Riddle (feeble minded, 17, mental defect) represent the two groups of people I feel are deeply stigmatised in society today because of the ongoing impact of previous biomedical research. Ideas that emerged in the anatomy labs and operating theatres in the 1800s have had a significant and negative impact on the perception of deaf and disabled people to this very day.

At the outset, I asked everybody showing me round their collections two questions – “What would you crawl on your hands and knees through fire to save?” and perhaps more loaded: “What inside your collection most disturbs you, or you’re most afraid of disturbing the public with?” I was often moved by people’s responses, and their intensely personal connections with the archived materials they protect. I was also baffled in equal measure by the things that people found disturbing. Most of the responses to my questions are woven into this show.

We arrive at any collection of artefacts with our own subjective political filters. If I were curating an exhibition from the collections I’ve witnessed, I’d present the same contents driven from the perspective of exclusion. I’d want the awkward questions out in the open. Whose stories are left out? Why are the majority of human skeletons used in teaching museums, small adult females allegedly from the Indian subcontinent? Why are the first images created of patients undergoing trepanning young, black and male? Does life come cheap in some areas of the world? Why do we value some lives more than others?

Presenting disabled and deaf people as spectacle for derision, ridicule or pity is still prevalent. Objectifying medical presentations where unruly minds and bodies were paraded before physicians and surgeons in their teaching theatres were no better than freak shows. All helped to educate the public about their place in the hierarchy of classes, races, civilisations, and nations that was so crucial to the 19th-century world view.

In 2016 we are fast returning to these toxic ideas with Disability and Capability Assessment Centres managed by Atos or Capita to weed out the useless eaters and demonise disabled people.

Dates and information about Hold the Hearse! 

This blog first appeared on 6 June 2016 online


In conversation with Julie McNamara: the making of Hold the Hearse!

In June, Vital Xposure’s new production Hold the Hearse! will tour medical museums around the country. The play was commissioned as part of Exceptional and Extraordinary – Unruly Minds and Bodies in the Medical Museum. Writer and performer Julie McNamara talks to Emilia Teglia about the themes of the play, why it is important to talk about medical history to understand the way we perceive difference today and her personal response to the collections.


Emilia: Hold the Hearse! tells the story of Walter Riddle and Mad Mary, two characters on the run, hiding amongst museum collections.  How does the play relate to the collections?

Julie: Both characters’ stories are taken from the museum walls. The names are slightly changed to protect family who may still be around, because they’re real people. And I think when people are wandering around the museum they tend to forget: these are real people, you know, even down to the pickles in the jar, this is somebody’s son, this is somebody’s child we’re looking at. Anyway the intention behind the piece is to flesh out how we’ve come to treat disabled people so harshly as freakish and so differently. That’s really come about because of the context, in the way we collect and label human remains like ‘monstrous births’, ‘flawed samples’, ‘unviable fetuses’. Even the way people have been categorised has been informed by advances in biomedical discoveries. Of course the advance of science and surgery and health has informed us, but it has actually created segregation.

I became really excited by the content of the hidden collections, i.e. the collections that the museum curators may be disturbed by, that there may be some ethical questions about, that they don’t or can’t show the public. I’m also interested in the relationship each curator or collector has with the collection. Because they’re not very willing to let them go regardless of the ethical dilemmas. I asked everybody two questions, at the beginning of my process, I asked everybody who showed me around both the hidden collections and the collections on public display: “What would you crawl on your hands and knees through a fire to save?” and “what inside your collection most disturbs you, or you’re most afraid of disturbing the public with?”. And I was quite surprised at what they showed me.

With regard to the last question, I think I have a tougher muscle. I’ve been raised around disabled people all my life, I’ve got two sis… – well, one’s dead now but I had two disabled sisters. That’s my normality, that’s my ordinary world, you know people with different shapes or functioning in the world, that’s my reality. Diversity is at the heart of nature and without diversity we wouldn’t exist or function. So I wasn’t at all afraid of the things I was showed. In fact I wanted to see some things, some bodies, some remains that looked like my own sister because my mother was never allowed to touch her or hold her or keep her close and they left her to die. She was described as a ‘monstrous birth’, she’d given birth to a monster, basically. And her understanding of that was terrifying. She was 18 years of age, unmarried, her first child, and she was never allowed to see or touch her. She was told it was ‘God’s way’ and this was her ‘punishment’ and they left her to die. Then she was given some information about the condition. She was told this was an anencephalic still birth and it couldn’t have been a still birth because they’d   left her to die.

So, given that that has been one of my mother’s hauntings all of her life I thought actually I would like to see what could be so frightening that you couldn’t touch or see your own child.

Dan [names have been changed] who curates the museum with all those human remains collections for the college of surgeons didn’t want to show me any of the foetuses at all. He said he found that very painful and he didn’t want to be the one to show me around. So his colleague Laura said she would do it. “I don’t feel squeamish, but” she said, “I understand why Dan is squeamish, some of them are hard. There’s a baby’s head here that has clearly been dissected in half, and it looks very much like a two-year old child”. I said: “to me it doesn’t look like a baby, a doll or something, you know” but she said: “no, that’s very real, very real and very frightening”. And I went: “ok…”.

So I saw that part of the collection that’s all about unusual-shaped births, foetuses that weren’t fully developed, with extraordinary shapes and differences in the way they’d developed and most of them that were collected had not come to full term. Some had, interestingly, and I know how they died. One of them looked like he’d been smothered to be honest. And so I saw children with two heads or you know four legs or four arms or something and it was fascinating but I thought…I’m a little afraid of spiders so I didn’t like the one with too many legs, for me, anyway. I wasn’t sure of that one. But all of the others I would have no problem holding, being near, suckling, and I just thought, wow, that we can do that to a human being, to deprive her of flesh-to-flesh contact with her own baby. Knowing that that baby was possibly gonna die. I wonder if they do that today?

Emilia: So what was the response of other curators to your questions?

Julie: One person showed me the thing that she was most distressed by. It was two sheep’s stomachs, and it was like a dandy’s blouse, very frilly, and I can’t remember why she was distressed by them actually, I just remember feeling a sense of awe at the things that people are shocked by and all that tells me is, it’s about the filter we bring to any subject, whatever we bring we carry our own particular lens that we perceive the world through. And so it’s our fear that we project onto that sheep’s stomach, or onto that halved head, or on to that… (giggles) There was someone that showed me this collection of dolls and she said: “I find it bizarre, frightening” she said, “the first time I’d seen these they actually entered my dreams”, and I went: “oh, what is it that frightens you about them?” and she said: “look at them they’re sinister, and I thought it’s just a collection of dolls” (giggles) And they had been bandaged up in different ways and one of them was on a crucifix which apparently was to show a particular kind of nursing procedure with a child who had flexible limbs and they hadn’t set properly and they needed to be held in place so that the hips would settle and the shoulders would settle, and this was a child whose every joint was out of place and had been bound to a crucifix. And I thought, gosh, that says a lot about the Christian world and the way we are obsessed with certain shapes and forms that we bring into our every-day practice. But I looked at them and I thought – well they’ve got boggly eyes but they’re just dolls, you know, they don’t frighten me, so I couldn’t get that at all, I don’t know what she was bringing with her.

Emilia: And these foetuses, are they somehow related to the story?

Julie: There is a foetus in the story. Because of Mary’s story. She spent long years in Bedlam – ahem, in Bethlem hospital, for “excessive grief over the loss of a child”. And so I decided that her journey through the play is to reclaim her child so that she could bury her bones because she was haunted by the loss of her and the child had been taken away from her because it was a ‘monstrous birth’. And that child had landed up in a pickle jar in Hunter’s museum, and she knew, she’d been rattling around for centuries trying to find which jar her child is in: “I want to reclaim her bones!”, and rattling through the museum until she can. And she’s the one who says “this is not natural. This is no earthly thing, why would you put it in a jar to stare at us forever? You know, the natural thing is to plant it in the soil, let it be a tree, let it feed the daisies”, and on and on. Her journey through the play is to retrieve the child so she can give it a decent burial. But that’s not what happens, that’s what she wants – but that’s not what happens.

Emilia: and what about Walter Riddle?

Julie: He’s in there. He’s haunted by the giant. Charles Byrne who is known as the Irish giant, he came from County Tyrone, he’s 7 foot 6 or 7 foot 8 I think, and his body was intercepted on its way to being buried in the sea, the hearse was intercepted, hence the title ‘Hold the Hearse’. Five hundred pounds was the money that “changed hands”, if you like, and he ended up being displayed in Hunters museum. Byrne had deliberately left clear instructions, because he knew Hunter was after him when he was not well, he’d said: “God forbid my bones should be with that man there”. And he wanted a burial at sea to be out of Hunter’s grasp but Hunter got him and he’s still there to this day on display. And when I asked about the ethical dilemma around that, they’re not willing to let him go. Even the Irish government intervened some years back, I think it was 2005, and suggested that he should be returned to Ireland and his bones laid to rest in county Tyrone, in his family resting place and the museum people, including Dan, said no, quite clearly he’s owned by Hunter. It belongs to this collection, it belongs to this museum. And I said: “oh, that’s a bit awful, shouldn’t the family have the body?” And Laura said something that was interesting because he said none of our bodies are owned, even to this day in a court of law the body is not property it is fair claim to anyone and given that body was purchased and money changed hands the body belongs to Hunter. So those remains, are still on display in Hunter’s museum. And by the way Walter wins the day at the end of the story…


Hold the Hearse! Information, Dates and Tickets


For immediate release: 23 March 2016


Unique film, dance, performance and comedy commissions draw on museum collections to explore our problematic attitudes towards difference.

Since humans first appeared on earth no two have ever been the same. Yet somewhere along the way, certain bodies and minds came to be highly valued whilst others became viewed as problematic: as deviant and unruly, deficient and requiring adjustment towards a perceived idealised norm.

Following Mat Fraser’s astonishing and award-winning commission Cabinet of Curiosities that toured UK museums in 2015, Exceptional & Extraordinary invites four artists to explore behind the scenes of eight of the UK’s most renowned medical museums. In collaboration with experts in medical history, disability and museums – they are currently producing a series of thought provoking new commissions that examine our attitudes towards difference and aim to stimulate debate around the implications of a society that values some lives more than others. The subsequent ticketed performances and film will tour throughout June 2016 to all eight partner museums, with different groupings of the commissions so that every performance is unique to each venue and with many of the performances supported by after-show discussion panels with invited experts as well as opportunities to view and handle some of the objects that have inspired the artists.

Initiated and led by the Research Centre for Museums and Galleries (RCMG) at the University of Leicester, Exceptional and Extraordinary is a collaborative project involving 4 artists – film-maker David Hevey, comedian Francesca Martinez, dance company Deaf Men Dancing led by Mark Smith, artist and playwright Julie McNamara – and 8 museums (the Hunterian Museum at the Royal College of Surgeons of England (RCS); the Science Museum; the Royal College of Physicians (RCP), Thackray Medical Museum, Leeds; the Royal London Hospital Museum and Archives; Surgeons’ Hall Museums at the Royal College of Surgeons of Edinburgh; Museum of the Mind; Langdon Down Museum of Learning Disability). Project advisors are Tony Heaton, SHAPE and Katherine Ott, National Museum of American History, Smithsonian Institution.

More about the artists and the dates

More about Julie McNamara’s performance Hold the Hearse!

Funded through a Large Arts Award by the Wellcome Trust and a Grants for the Arts award from Arts Council England, Exceptional & Extraordinary is an ambitious project that aims to engage visitors to all the partner museums, professionals in the field of biomedicine and the broader public in a reassessment of widely held assumptions surrounding physical and mental difference, disability and contemporary (often negative and discriminatory) attitudes towards disabled people.

The commissions will offer new ways of seeing that will be used to question and stimulate public, biomedical professional and media debate around the social, cultural and ethical implications of medicalised ways of understanding difference that pervade biomedical professional practice as well as shape broader public and societal attitudes towards disability and disabled people.

‘Museums hold enormous potential to stimulate debate about important contemporary issues and, at a time when disabled people are unfairly bearing the brunt of government cuts, we believe it is important to be exploring ways of harnessing that power to ask challenging questions’. Professor Richard Sandell, Research Centre for Museums and Galleries (RCMG) at the University of Leicester.

‘We are delighted to be working with such an exciting mix of artists and experts across the fields of museums, disability and biomedicine. The unique process behind the project reflects RCMG’s established commitment to collaborative practice as a powerful means to address pressing social concerns.’ Jocelyn Dodd, Director of the Research Centre for Museums and Galleries (RCMG) at the University of Leicester
For further information, a range of images and interviews please contact Catharine Braithwaite on 07947 644 110 or
Notes to editors:

Tour dates
7 June Julie McNamara Langdon Down Museum of Learning Disability, Normansfield
8 June Julie McNamara and David Hevey Royal College of Surgeons of England, London
13 June Julie McNamara and David Hevey Royal College of Physicians of England, London
14 June Deaf Men Dancing Thackray Medical Museum at Yorkshire Dance, Leeds
15 June David Hevey and Deaf Men Dancing Surgeons’ Hall Museums at the Royal College of Surgeons of Edinburgh
17 June Julie McNamara Bethlem Museum of the Mind, Bethlem Royal Hospital, Beckenham
18 June Francesca Martinez Thackray Medical Museum, Leeds
20 June Francesca Martinez and Deaf Men Dancing Royal College of Physicians, London
21 June Julie McNamara and David Hevey Thackray Medical Museum, Leeds
22 June Francesca Martinez and Deaf Men Dancing Royal College of Surgeons of England, London
23 June David Hevey Royal London Hospital Museum & Archive, London
29 June Francesca Martinez and Deaf Men Dancing The Science Museum, London


This project brings together organisations with track records in innovative public engagement and an exciting blend of expertise in medical collections, the history of medicine, disability history and representations of disability within public history settings, museum ethics and public engagement with scientific and social issues. The Hunterian Museum at the Royal College of Surgeons (RCS); the Science Museum; the Royal College of Physicians (RCP), Thackray Museum, Leeds; Royal London Hospital Museum and Archives; Surgeons’ Hall at the Royal College of Surgeons of Edinburgh; Museum of the Mind; Langdon Down Museum of Learning Disability all hold extraordinary collections and bring rich expertise in medical history, community health, history of disability as well as a commitment to pursuing new ways of engaging audiences in debating biomedical science through the arts.

SHAPE is the disability-led arts organisation working to improve access to culture for disabled people. Visit Shape Arts

The Wellcome Trust is a global charitable foundation dedicated to improving health. They support bright minds in science, the humanities and the social sciences, as well as education, public engagement and the application of research to medicine.

Arts Council England champions, develops and invests in artistic and cultural experiences that enrich people’s lives. It support a range of activities across the arts, museums and libraries – from theatre to digital art, reading to dance, music to literature, and crafts to collections. Great art and culture inspires us, brings us together and teaches us about ourselves and the world around us. In short, it makes life better.