By Tessa Overmars-Marx / Reading Time: 5 Minutes
‘It is important that people see us as normal people and recognize us. We are part of the community as well!’
This quote symbolizes the importance of recognizing people with intellectual disabilities as part of our community. Being part of the community means being able to tell your story in everyday life but also in research. So we – as researchers – need to seek for ways to incorporate the voices of people with intellectual disabilities in our studies. Involving people with intellectual disabilities, however, brings many challenges. In my quest to overcome these challenges and to provide people with intellectual disabilities a platform to tell their story, I think I have found a promising method. So, read on….
People with intellectual disabilities often have difficulties on a communicative, cognitive and conceptual level. As a researcher, this meant I had to look beyond usual interview and focus group methods to productively involve people with intellectual disabilities in my study. By exploring the literature and sharing thoughts with colleagues, I came up with the idea of using photography to enable their involvement. People with intellectual disabilities are often better able to express themselves if they are supported by visual content. After reading other promising experiences with the use of the photovoice method, I became enthusiastic and decided to test it out.
What exactly does the method involve? It enables people to tell their stories through photographs they have taken themselves. In my study, I wanted to obtain more knowledge about the perspective of people with intellectual disabilities concerning their neighbourhood. So, I asked participants to photograph people and places in their neighbourhood which are important to them. I walked together with the participants through their neighbourhood. I had no active role, but instead I was ‘guided’ by them. In some cases participants found it difficult to take the photos themselves because they had difficulties in handling the camera, so I took the photo for them. However, the participants always determined the topic of their photos themselves. After taking the photos, we planned interviews to discuss them.
Photovoice enabled my participants to share their stories about how they feel in their neighbourhood by talking about their (self-taken) pictures. Using photography as an activity made participants feel involved in my research. They were able to naturally tell their personal story without having to refer to the cognitive skills they lack. During the interviews I asked open questions only, for example: what/who is on the picture?; why did you take the picture? And, if necessary, I asked for explanatory examples, like ‘could you tell me when you visited this place or could you give me an example of a joint activity you have carried out with your neighbour?’. By using this technique, I didn’t need any abstract concepts. These advantages provide people with intellectual disabilities an opportunity to explain their neighbourhood experiences and they were able to tell more about the daily contact they exchange with neighbours. This, in turn, was valuable in my research because it provides me with the possibility to distinguish important neighbourhood characteristics from the perspective of people with intellectual disabilities. This information is useful to advise care organisations in their way of working with people with intellectual disabilities who live in regular neighbourhoods.
Walking with the participants through their neighbourhoods meant gaining an insight into their lives. This was really great! The participants provided so much more information that, in my opinion, I would never have been able to elicit by means of conventional face-to-face interviews. The combination of walking together and discussing the photographs worked really well. In my research I want to find out how do people with intellectual disabilities feel in the neighbourhood and what neighbourhood characteristics contribute to this ‘neighbourhood-feeling’?’. To answer this questions their own personal and direct perspective is crucial! Perhaps equally important, caregivers and participants suffering from cold feet overcame their initial skepticism or fright and became enthusiastic! Moreover, since I started the ‘guided photovoice’ I am in a really good shape: I walked for hours with the participants and sometimes I almost had to run to keep up with them.
Would you like to know more about photovoice or do you have any other alternative strategies in interviewing people with intellectual disabilities or other groups, please contact me!
Tessa Overmars-Marx works as a PhD candidate in the Sociology department. Her PhD Research focuses on the relationship between the inclusion of people with intellectual disabilities and neighborhood characteristics. The research project is conducted in partnership with four care organizations working with people with intellectual disabilities.