A Scientific Model of Disability
Ju Gosling has had an artist's residency at the National Institute of Medical Research for the past year, funded by the Wellcome Trust. She has been working with two scientists exploring whether there is a 'scientific' model of disability that is distinct from the medical model.
Can you tell us about the residency with the National Institute of Medical Research?
I first came across the National Institute of Medical Research (NIMR) when I attended a course for artists at Guy's Medical School during Easter 2006 which was organised by the art/science organisation Arts Catalyst. This course, Symbiotica, was developed in Australia and aims to introduce artists to lab work, including teaching us how, for example, to extract DNA from saliva and to genetically engineer bacteria. At this point I never intended to work in the art/science field. As a disabled artist, I am deeply suspicious of work that appears to fetishise Science rather than questioning it, and this was my perception of the field.
However, as part of the course we visited the Institute, and were given a tour and presentation about how it all worked. The Institute is the world leader in medical research, and is effectively an academic institution with a lot of postgraduate students and post-doctoral fellows working alongside the scientists. Much of the funding comes from the state, so you tend to get scientists who are more interested in the pursuit of knowledge than the pursuit of cash. Having said that, of course, these days all research is more and more dependent on private funding, and scientists at the Institute are now told that they must work to increase the wealth as well as the health of the nation.
The then curator, Simon Gould, was also on the course, so I got to know about the Institute's art programme through this. Afterwards Simon and I met several times and explored different options, before applying to the Wellcome Trust's Sciart fund for a grant. (Wellcome now runs a slightly different funding programme, but still offers funding for artists who want to work jointly with scientists.) I'm the first disabled artist to participate in the Institute's art programme, and I think too that I am the first artist working in Disability Arts to receive Wellcome Trust funding, although I'd be interested to hear from other disabled artist who have received funding from them.
The residency has been for one day a week, with me either working from home or at the Institute as relevant. I've been working with two particular scientists, Evelien Gevers and Malcolm Logan, but have also met a number of other scientists working in different fields during my time there. Malcolm researches into how upper limbs develop, while Evelien looks at how bone end plates develop. Evelien is unusual in that she also practices paediatric medicine, specialising in growth disorders.
I'm particularly interested in the notion of a scientific model of disability. How has this concept evolved? How has it been received?
Something which only became clear to me when I first came into contact with the Institute is that very few medical researchers practice medicine - in fact most have never studied medicine - while very few doctors carry out research other than drug and other treatment trials. I'd always assumed that medical researchers and doctors were one and the same, and I think this assumption is implicit in the Medical Model of Disability. I'd certainly conflated researchers and doctors when I created my Helping the Handicapped website as a commission from the city of Graz in Austria in 2003, which illustrates the different models of disability.
I therefore thought it would be interesting to explore whether it's possible to define a Scientific Model of Disability which is distinct from the Medical Model. I'm not aiming to come up with a definitive answer, but rather to present my findings from the residency for further discussion among the disability community. As a result I've only held discussions with scientists so far, as well as doing a lot of hard thinking. I obviously started out by talking over different ideas with Malcolm and Evelien, but at the end of September 2007 I held a lunchtime discussion at the Institute which was open to everyone. There was a very good response. People were very open and interested - despite it being impossible to regard my Medical Model illustration as anything but offensive to scientists!
What people really focussed on was the differences between how doctors and scientists conceptualise and approach disability and disabled people. This in turn made me realise that, just as the Medical Model is not really about how doctors view disability, a Scientific Model won't just be about how scientists view it. The discussion was, however, very helpful in formulating a potential model. What I'm hoping to do next is to hold a discussion in central London that's open to everyone, and will keep people posted about this through ADC magazine, EtCetera and, of course, DAO!
What art work has come out of the residency?
I'm still preparing for the show, which runs from 31 January to 31 March 2008, so I've not got a definitive list yet. But essentially the work explores the concept of human abnormality, as well as the growing role of genetic testing in society today. Something I've done which I've not done previously is to produce wall-based work that forefronts or integrates text; previously I've kept my gallery and text-based work separate.
I have however included autobiographical work and a self-portrait, which is something I often do. As a woman I'm always interested in exploring the relationship between being a model, who's usually female, and an artist, who's usually male. From another perspective, I'm always concerned about the exploitative nature of modelling, and so prefer to use myself as a model to avoid exploiting another disabled person.
I've also included a performance piece where the visitors to the show are actually the performers. I've adapted a miniature version of a fairground 'grabber' machine to hold micro tubes - miniature test tubes - containing fortune cookie fortunes. The challenge for the participant is to be able to operate the crane and seize a tube within a short time frame, during which fairground music plays. The work explores the increasing role that lab testing is playing within the lives of us all, as well as questioning whether our fate can really be dictated by a test result.
How have you handled communication with the scientists you've been working with through the residency at NIMR?
When Simon and I wrote the Wellcome Trust grant proposal, we made discussions with Evelien and Malcolm central to the residency process. What this has meant in practice is that about once a month we've talked intensely for an hour or two about whatever I've chosen to ask them about, and that has then led me into new directions. In between times we've corresponded by email. At the end of 12 months I summarised the questions we'd discussed and asked them to answer these again, this time in writing, and the result will be included in a website documenting the process which will be launched as part of the show.
I've enjoyed reading your NDACA blog. How has the residency been going?
I'm very much enjoying working at Holton Lee. I hadn't been there before I got the residency at NDACA (the National Disability Arts Collection and Archive), but I'd heard so much about Holton Lee from other disabled people that I knew it played a very special place in a lot of people's hearts. Once I was appointed as artist-in-residence I was actually glad that I hadn't visited previously, because it's allowed me to introduce readers of the blog to Holton Lee as I discovered it for myself. I was also glad that I hadn't been involved in the past discussions about whether or not we needed an archive and where it should be; since other people decided that we should have one and it should be at Holton Lee, I feel I can represent the community decision without having influenced it in any way.
The key thing that needs to be done right now is to raise the rest of the money that's needed. It's a drop in the ocean compared to the money that is spent in the arts world every day, and I think it's a disgrace that the Lottery application was turned down after the Arts Council had already committed half of the funds needed. In the same funding round the Lottery gave about three quarters of a million pounds to restore a steam train that was only in service for a brief period because it never caught on as a design, which is really insulting. Holton Lee has an excellent record in commissioning and building award-winning arts buildings, but this was ignored along with the obvious value of the project. I would urge people to write to the Lottery to protest and to ask for the decision to be reversed, but also to let Holton Lee know about any other potential funders or funding sources they can think of.
Unfortunately we are not helped by politicians who still think of art produced by disabled people as laughable. For example, in October David Cameron told a meeting of leaders from the arts that he wanted the Lottery to fund the 'right' causes and not 'one-legged Lithuanian dance troupes'. He later apologised to Lithuania but not to disabled people, despite his being the parent of a disabled child. It would be a brave Lottery official who supported Disability Arts in these circumstances. However, no one is going to give up, and I am certain that we will see NDACA housed in a purpose-built home at Holton Lee before long.
ABNORMAL - Towards a Scientific Model of Disability
Until 31 March, The National Institute for Medical Research
The Ridgeway, Mill Hill, London NW7.
To find out more about Ju Gosling's work you can visit her website at www.ju90.co.uk