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Bionic people: enhancement, bioethics and the politics of disability

Woman as half-cheetah half-human with prosthetics legs

Aimee Mullens in Matthew Barney’s CREMASTER 3 (2002). Superhuman exhibition.

Two current exhibitions, a workshop we recently organised at DaDaFest, and the ongoing controversy around “bladerunner” Oscar Pistorius’ inclusion in the Olympics have got me thinking about developments in human enhancement technologies and the impact on disability politics.

The athletic success of double-amputee runner Oscar Pistorius has propelled this discourse into the mainstream. Some say the blades he runs on give him an unfair advantage, allowing him to push off the ground more efficiently than a normal human ankle. This discussion of whether Pistorius, until now regarded as a “disabled” athlete, is in fact an “enhanced” athlete is an extraordinary development, and represents a major milestone in the development of prosthetics technology. Some writers, such as bioethicist Andy Miah, have pointed out that it has an even greater significance:  “… the rise of technological enhancements means that prosthetics can overtake the capacities of biological body parts and what we consider today to be optimal may, tomorrow, seem inefficient.” It is easily conceivable that different prosthetics and enhancements may give other Paralympics athletes advantages to the extent that they begin to produce faster, further, stronger, more accurate performances than athletes in the non-enhanced Olympics.

Athlete with prosthetic 'blade' legs

Oscar Pistorius, Olympic athlete

Some of the historical background to this type of speculation is explored in the Wellcome Trust’s ‘Superhuman’ exhibition, which opened in London recently and runs to October. It suggests that “scientific developments point to a future where cognitive enhancers and medical nanorobots will be widespread as we seek to augment our beauty, intelligence and health”, and does so through displaying medical, scientific and cultural artefacts which humans have used to make themselves better from early times, from an Egyptian prosthetic toe and a nose prosthetic for a 19th century syphilis victim, to modern cosmetic surgery, i-Limbs and futuristic promises of nano- and biotechnology.

Yet the vision of a bionic future jars with the reminder, in another part of the exhibition, of the artificial limbs used to “normalise” – but certainly not to enhance – thalidomide children. While there may be a gradual trend to more functional prosthetics adapted for the individual, in reality many disabled people’s experience of prosthetics is still uncomfortable, limiting and frustrating.

The notion of enhancement, of making ‘superhumans’ of disabled people, presents problems for what has been the prevailing discourse in disability politics in the English-speaking west, which centres on the social versus medical models of disability. In this discourse, there is a “medical model of disability” which sees the disabled person as a problem, to be adapted, cured or shut away. Against this, the “social model of disability” considers disablement to be created by the way that society and the physical environment have been structured, and to have little to do with impairment itself. Using this model, the ‘cure’ to the problem of disability lies in the restructuring of society. This position became increasingly rigid in the UK during the 80s and 90s, with corresponding suspicion – indeed hostility – directed at health and medical science professionals, who might wish to cure or prevent those impairments that are part of a person’s identity.

In 2006, sociologist and disability activist Tom Shakespeare suggested in his book ‘Disability Rights and Wrongs’ that the disabled people’s movement needed to move on from this polarised position. He proposed an alternative account of disability, which takes into account the interplay of individual and contextual factors. In other words, he argues that people are disabled by society and by their bodies, and therefore that it is important both to prevent impairment and to support the rights of disabled people.

A table with thousands of pills

Pharmacopoeia, Cradle to Grave II (2003). Niet Normaal.

An exhibition currently showing at Bluecoats Gallery, Liverpool, as part of DaDaFest, makes an interesting contribution to this more nuanced approach to disability, exploring themes of technological enhancement, conformity, and normality. ‘Niet Normaal’ is a new version of an international exhibition that explores the questions ‘What is normal?’ and ‘Who decides?’ through the work of contemporary artists. The Liverpool version, curated by Ine Gevers and Garry Robson, recognises that technology is generating new opportunities for people of all sorts, shapes and sizes, but sets this against the striving to become ever more uniform, ever more ‘perfect’.

Javier Tellez’s film Caligari und der Schlafwandler (Caligari and the Sleepwalker) is a delightful homage to Robert Wiene’s The Cabinet of Dr. Caligari (1919), a film that has been interpreted as a commentary on the German people’s somnambulist response to the rise of the Nazis. In Tellez’s version, psychiatric patients play the characters. The story of the doctor’s “discovery” of a sleepwalking alien is beautifully produced and raises questions about what we perceive as mental illness and how we communicate our complex internal worlds. Don’t we all hear voices some of the time?

Film still (black and white) of a man holding a blackboard on which some German words are chalked, the translation is "You have to sign this form"

Javier Tellez, Caligari und der Schlafwandler (2008). Niet Normaal.

In the next gallery, a vast glass-covered table holds a collection of 14,000 pills. Pharmacopoeia’s Cradle to Grave II is the outcome of a study into the use of medicines by the average Dutch person, but is bordered by photographs and objects from daily lives. If these are the “normal” relatively healthy people, what does this vast intake of powerful medication imply for how we understand our own wellness?

Imogen Stidworthy’s video installation focuses on the speech therapy of photographer Edward Woodward, who lost his voice in an accident. The strain of his production of words is felt through vibrations on a bench. The fact that the words he is struggling to pronounce are those in the title of the piece, I Hate, suggests his anger at his debilitating situation.

As someone with a fair amount of titanium in her body, I was entertained by Floris Kaayk’s video Metalosis Maligna, a mockumentary about a disease that affects patients with metal-based implants, eating away the human tissue as the metal takes over the body. The CGT work is impressive and there are some very comic moments. It’s also showing in the Superhuman exhibition.

A man in a hospital bed, his flesh being replaced by metai

Floris Kaayk, Metalosis Maligna (2006). Niet Normaal & Superhuman.

I was at DaDaFest for the fourth project of an Arts Catalyst programme strand, Specimens to Superhumans, a collaborative project with Shape, a disability-led arts organisation. Specimens to Superhumans aims to provide a series of creative spaces for disabled artists to engage with contemporary issues around biomedical science and ethics. The activities have included artists’ commissions, panel discussions and practical creative workshops.

At DaDaFest, we organised a 2-day film-making workshop for disabled artists and film-makers, led by writer/director John Williams. The intent of the workshop was to create short films that imaginatively addressed themes of disability, bioethics and prosthetics. John Williams’ films combine live action, animation and visual effects, engagingly dealing with highly sensitive subjects. His award-winning film Robots – The Animated Docu-Soap (2000) tells the story of three redundant robots who, having acquired disabilities or mental illness, attempt to reassert meaning to their lives, while in Paraphernalia (2009) a young boy gets annoyed with the little robot that follows him everywhere, but the robot is more than just a toy and turns out to be the object on which his life depends.

The two short films produced by the participants in less than two days – Side Effects and The Experiment – will be showcased at DaDaFest Film Shorts on 21 August 2012, at FACT, starting at 5pm. We also hope to put them online – so watch this space.

John Williams, Robots – The Animated Docu-Soap (2000)

John Williams, Paraphernalia (2009)

Human specimens: a labyrinth of morality, science and law

Aaron Williamson, Specimen Mirror, performance, with the skeleton of Charles Byrne, Hunterian Museum, 2011

I was interested to see this debate come up in the media just before Christmas:

Royal College of Surgeons rejects call to bury skeleton of ‘Irish giant’

The authors of a paper in the British Medical Journal called for the skeletal remains of a man called Charles Byrne, the so-called ‘Irish Giant’, on display in the Royal College of Surgeon’s Hunterian Museum in London, to be buried at sea. Byrne, who lived in the 18th century and was 7′ 7″ tall, was an object of curiosity for the  famous surgeon and anatomist Sir John Hunter. Byrne became so afraid that doctors would dissect his corpse after his death that he left specific instructions for his body to be buried at sea. But when he died, aged just 22, Hunter bribed a member of the funeral party and stole the body. Byrne’s skeleton has been on public display ever since. The BMJ paper’s authors claimed that all possible medical insights from the skeleton have now been gleaned and Byrne’s remains should be buried according to his wishes, but the Hunterian Museum rejected this call, saying that it considers that the educational and research benefits merit retaining Byrne’s remains.

This story has a particular interest for me because, in May last year, we co-organised an event with the disability arts group Shape at the Hunterian Museum. Titled ‘Labyrinth of Living Exhibits’, the event addressed the issue of human specimens in such collections.

The Hunterian is little known, central yet tucked away upstairs at the Royal College of Surgeons on Lincoln’s Inn Fields. There are thousands of specimens on display, the remains of the once vast collection made by Hunter. Many still carry his classification as either ‘morbid’ or ‘normal’. The unsettling collection contains many human parts, including whole skeletons and human foetuses. The focus of Hunter’s collecting was clearly biased towards ‘the different’ – extreme cases of growth, “abnormality” and disease.

In the Labyrinth of Living Exhibits, artist Aaron Williamson curated four simultaneous, specially commissioned, site-specific performances, which infiltrated and responded to the collection, performed simultaneously by disabled artists Aaron Williamson, Sinéad O’Donnell, Brian Catling and Katherine Araniello.

Katherine Araniello, BiPAP 1 (Living Experiment), photo Royal College of Surgeons, 2011

In Araniello’s work, she took on the guise of a guinea pig escaped from a laboratory in a dark, slow and subversive performance. Brian Catling’s performance Out of Its Depth, in fact, began at the Hunterian in 1979 in response to a “specimen” which the Museum housed until recently: the body of a one-eyed child (now locked away out of public view). Wearing a latex, one-eyed mask, Catling walked through the collections or stood by a pillar, peering through his fingers and making faces, mirroring the audience’s curiosity. In Williamson’s own performance, Specimen Mirror, he distorted his own facial features by pressing them against the glass cases of the collections, in response to the flattened suspended specimens.

Brian Catling, Out Of Its Depth, photo Royal College of Surgeons, 2011

A lively panel discussion followed the performances. Aaron Williamson opened the discussion by describing the impetus for each of the performances, explaining his curatorial interest in the responses of artists who are “set apart from the norm” through illness or medical prognosis.

The museum’s director, Sam Alberti, then gave an honest exposition of the Hunterian’s collections of “disabled people as objects”. He explained that the museum was set up in the 18th and developed in the 19th century, and that in those centuries museums were in the business of “classifying” difference. Human remains that came into museums were classified against the “norm”, which at that time, he said, was male, heterosexual, white and European. Anyone else was pathologised. The Hunterian Museum, Alberti explained, is not a medical museum, but a medical history museum, and what it displays are the legacies of prejudice. Alberti said that he felt very passionately that it was important to understand and show to the public the representation and construction of difference, and that the display had to be seen through this historical lens. Araniello disagreed with Alberti and said she didn’t feel that it was helpful at all to have such images and specimens on display for the public, and that it did more harm than good in continuing to objectify and pathologies people.

You can watch video recordings of the full panel discussion here.

Panel discussion of Labyrinth Living Exhibits, photo Royal College of Surgeons, 2011

So I found it fascinating to see the debate about Charles Byrne’s remains raised again in the media, quoting Alberti saying “The Royal College of Surgeons believes that the value of Charles Byrne’s remains, to living and future communities, currently outweighs the benefits of carrying out Byrne’s apparent request to dispose of his remains at sea.”

It is a complex debate between science, education and morality, complicated by a man’s dying wishes and a nasty case of corpse robbing.

But there is also a wider context for this debate in the claims on human remains in all other museum collections. Since the late 1970s, human remains in museum collections have been subject to claims and controversies, such as demands for repatriation by indigenous groups who suffered under colonization. These requests have often been contested by the museums and by scientists who research the material and consider it unique evidence, echoing the Hunterian’s arguments over Byrne’s remains.

This is a topic that has interested me for several years. At one point, I was involved in some very early stage discussions with another London museum about an exhibition on such a theme. Whilst the exhibition never developed, there has been much progress in this area over the last decade. Increasingly, many museums are removing human remains from their collections, sometimes returning them to their countries of origin, often for reburial. One sticking point was legislation that prevented most national museums from removing items from their collections, but this changed in 2004 (under Section 47 of the Human Tissue Act), and nine national museums now have the power to deaccession human remains under 1000 years old held in their collections. In 2011, for example, the Natural History Museum returned 19 ancestral remains to the Torres Strait Island community. There is an interesting video about the return on the museum’s site.

But in a book published last year, Contesting Human Remains in Museum Collections, the sociologist Tiffany Jenkins argued that museums were being “over-sensitive” to demands for greater “respect” for human remains, and removing specimens from public display that were valued by museum-goers.

It is an interesting and ongoing debate. Do you have examples of other art projects or exhibitions that have explored these issues? I’d be interested to hear.

Abnormal

Ju Gosling, Design4Life, 2008

Ju Gosling’s exhibition ‘Abnormal’ is at the National Institute for Medical Research (NIMR) at Mill Hill in North London until the end of the month. Ju has been artist-in-residence at the NIMR, looking at how scientists regard disability and “normality” and whether there is a ‘scientific model of disability’ as distinct from the much-discussed ‘medical model‘. Her residency has included a series of conversations with the scientists Malcolm Logan and Evelien Gevers – recorded on the project’s website. Ju concludes that there is a ‘Scientific Model of Disability’ held within society – disability is abnormal: science will ‘cure’ it – but she notes that this model is neither scientific nor reflects the views of individual scientists. She argues that it is, in fact, extremely unhelpful to scientists, placing unnecessary pressures on them and hampering their work. Whilst some of the artworks in this exhibition have unequivocal messages and the wall-texts are highly informational, the conversations that the artist has had with the scientists, and the context in which she has been working, has led to a series of works that come across as thoughtful and enquiring, rather than polemical.

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