Posts tagged ‘learning disability’
November 4, 2011
The use of visual research methods is often celebrated as a useful method in participatory research. But what happens when the research centres on vulnerable people, including people with quite profound learning disabilities? How can you conduct participatory research in these communities? Are visual methods appropriate?
During the research for my MA dissertation I had to confront all of these issues. I spent the summer of 2011 with the community of L’Arche Kent as part of the research for my MA thesis. My research explored concepts of home and community, and how it is within these structures that the community enables an environment of acceptance and equality for people with learning disabilities that is so rarely achieved in the wider society. The final product of my research was a dissertation in two parts: the film Living Together (above) and a written thesis (read it here).
Who are L’Arche Kent?
Part of the wider L’Arche International community (5,000 people in over 130 different countries), L’Arche Kent is a community of over 100 people with and without learning disabilities living in six houses across Kent. The severity of disability in the community varies from mild with only minimal support needs to profound with intensive one-to-one, or sometimes two-to-one 24-hour support needs. The ages in the community range from 0 – 60 something, and right now there are people from 17 different countries in the community.
Evidently, if I wanted to conduct inclusive research in such a community I had to use a method which not only cut across age barriers, but which was also understandable to people from different countries as well as accessible to people of many differing abilities. Which meant I needed a very accessible research methodology, something that would enable participation by even the most disabled people. And so I decided upon video.
Video lent itself to this research because of its flexibility and the number of ways it encourages participation between the researcher and the people they are collaborating with. It also meant I could produce a final version of the research which was accessible to the community. Video really lets people take part in a way that more traditional research methods do not. This is especially true with people who are non-literate and / or non-verbal, or with learning disabilities of varying degrees, who may not be able to undergo long conversations or interviews.
Cameras, video and TV are a part of everyday life here in the UK, and as such are understood and understandable to the majority of people. Add to this the flexibility that filming provides and we start to see some of the advantages of using this method: I had people filming me, filming themselves, filming each other, putting on plays for the camera (alone and in groups), directing me and each other, interviewing me and each other, helping in the editing, taking part just by being in the room and occasionally shouting suggestions. People borrowed cameras to film their own lives; some people simply enjoyed watching what was going on. The beauty of a camera (both still and moving) is the number of people who want to take part. And because people were having fun it made my research really easy – I had no issues with access, no problems with getting people to take part and most importantly no issues of people feeling disconnected and therefore exploited by the research. This also meant that the community had equal ownership of the project. All of these meant that most people within the community wanted the project to succeed as much as I did, which made a huge difference, and helped balance the ethnographer – informant relationship in their favour.
Using Steady Wings to improve accessibility
One of the major factors helping make video accessible in my research was the use of Steady Wings. Designed by filmmaker Leonard Retel Helmrich, Steady Wings are an amazing piece of equipment which offer a range of filming possibilities outside of the traditional norms. You can see them in use during Sarah’s portions of Living Together – nearly all of her filming was done using this equipment. In my research they helped make a camera easy to use for less mobile people, and less intimidating for many others – having the camera mounted on a set of Steady Wings allowed people to easily hold and move with the camera, pass it amongst themselves, or simply explore different angles and views – offering different views of the world, smoother movements, and the freedom to play without worry. They took the worry out of handling unfamiliar equipment and made it fun, and ultimately led to a much greater involvement by some of the disabled members of the community than I originally imagined possible.
Of course as with any research there are some aspects of using film that need care and consideration: informed consent was a concern; ensuring people understood what was happening was sometimes challenging, although not as challenging as managing the expectations of some members of the community who thought they were going to become famous Hollywood stars following my time in the community, and the one problem that I did not forsee was the difficulty in getting back some of the borrowed cameras at the end of the research period! Whilst some have argued that any research with vulnerable people is exploitative, I personally believe that so long as proper care and consideration is taken, these issues are no more complex in conducting research with people with learning disabilities than with any other group, and in fact film offers quite the reverse, allowing people to speak for themselves, rather than have others speak for them.
I really enjoyed my time with L’Arche Kent. As well as being integral for my MA thesis, the filmed work has enabled me to produce a number of shorts which L’Arche Kent are using on their website, and I continue to be involved in the community. My findings on home and community made a contribution to the literature, but in the end the learning I will take away from this was that research in difficult circumstances becomes, if not easy, then at least possible, if you use a method that allows people to be involved as much as possible and to feel really involved. I’m not sure there is a better method than video for this, but that point remains open to debate.