As the mission of the National Institute for Intellectual Disability (NIID) is committed to the full inclusion of people with intellectual disabilities through education, research and advocacy, it is important that the voice of people with intellectual disabilities be heard. As a result, inclusive and participatory research is a cornerstone of the work of the Institute. Students undertaking the Certificate in Contemporary Living (CCL) learn a number of different research methods, and they are key participants and co-researchers on a number of projects. One of the more innovative methodologies used by students is that of Photovoice which combines photography with social action. Photos taken by people are then used to assist them to reflect upon and become more involved in decision making about their lives (Booth and Booth 2003; Wang and Burris 1997).
A Photovoice project has three distinct parts: selecting; contextualising and codifying.
Selecting—The project typically starts with a research question. The participating researchers are then trained in how to take photos of their own choice relevant to the question. The question relates directly to the life experience of the researchers, for example, ‘What is life like for you?’ The photographs from this initial stage of the project are then printed, and each member of the research team picks a small number of photographs that provide the best answer to the question.
Contextualising—Each member of the research team puts a caption on their photographs and brings these to a roundtable focus group. The captions set the context for discussion in which each group member shares what is happening in the photographs.
Codifying—During the focus group, the photographs are used to start a discussion about the topic under investigation. The photographs help stimulate discussion and identify the issues, themes and/or emerging theories.
The methodology is inclusive and for adults who have literacy problems it has proven to be a useful tool in collecting and presenting information about the research questions. Using photographs also allows the findings to be seen through the eyes of the ‘researcher’ which, in the case of the NIID projects, are also ‘the researched’. The findings are no longer just presented in text, but are supported by photographs that make the outcomes much more accessible than is often the case in reporting disability, social care and health research.
Two groups of the Certificate in Contemporary Living (CCL) students have used Photovoice to carry out research projects at the NIID: ‘A Snapshot of Life at Trinity College, Dublin’ and ‘Getting Political’. The major findings of the first project are described here and the second project is profiled by the students themselves.
‘A Snapshot of Life at Trinity College, Dublin’
The CCL students posed the research question: What is a day in the life of being a student like at Trinity College? The students attended a workshop on how to use a digital camera; this was followed by a session on the stages in the research process. Each student involved in the project spent a full day taking photographs, from the time they left their home to go to college to the time they returned home. Their photographs were then developed and up to twelve students, working with a co-researcher, gave each of their photographs a caption. The student then identified six photographs which they felt best told their story about college life. To showcase their individual story in readiness for discussion at the focus group, each student created a poster with their photographs and captions. Through Photovoice, CCL students repeated the process of capturing a day in their life in both years of the course.
What the students found out
The students discovered three main themes from the discussion of their photos over the two years, specifically that being at college led to ‘gaining independence’, ‘building new friendships and social networks’ and ‘learning new things in class’.
Gaining independence—The students spoke about their new ability to travel independently to college on pubic transport, how this had enabled their confidence to grow, and how the achievements made them feel. The commonality of this experience is well illustrated in the following voice of one of the students:
When I first started college as a student, I didn’t know how to get the train on my own…. I got the courage to get on the train and travel into college… a big step up as an achievement.
Building new friendships and social networks— Friendships made by the CCL students with their fellow classmates, and also through the NIID mentoring programme with other undergraduate students, were of great importance. The students also spoke about the opportunities they had in meeting people from different service agencies which would not have happened outside of the course.
I know my friends, I hope to keep them after college, I’m happy I made them.
They (mentors) are not treating us like we have a disability. They are treating us more like ordinary
Learning new things, class work—Students discussed the course content, new knowledge and skills they were gaining from the Certificate programme. They identified the subjects they found easier—or more difficult—and they shared what they enjoyed about studying.
Now when we come to Trinity… it shows that I can work in a large group…it’s quite good as we are all
sitting around and there is different opinions and different expressions.
At the end of the day, we are all here to study and hopefully get a job after.
Like most college students coming to a finish of their studies, the CCL students’ hopes and dreams for the future included gaining meaningful employment, relationships, travel and future development and personal growth.
Students talking about ‘Getting political: a Photovoice project’
Brian Higgins, Emma McCormack and Wayne Kenny with Zoe Hughes and Una Healy
In our first year of the CCL course we took part in an election campaign to elect our class representatives. Their job was to speak on behalf of the CCL students to the staff, attend CCL committee meetings, organise CCL social events and represent the CCL students on the Trinity Student Union committees. Those of us who wanted to run for election made a campaign poster and gave a manifesto speech to all of the CCL students. This helped them decide who would do a good job. The three of us were elected: Brian Higgins, Emma McCormack and Wayne Kenny. We thought it would be good to do some research on what it was like being a class rep and Zoe who is doing her PhD offered to help us. We all became co-researchers.
We decided to each take photos of the things we did as a class rep over one month. We set up a focus group with Zoe and Molly where we discussed our photos. Under each photo we had written a caption that Una helped us with. From sharing our photos with one another in the focus group we agreed on the slogan United we stand: divided we fall; that friendship and trust happened as part of being a class rep; and that being a class rep is not without its difficulties and challenges; and that going to conferences for us is like it is for any other researcher.
United we stand: divided we fall.
Getting our point across can be difficult. We all had sat on various committees before coming to College, but being a rep in college was somewhat different from what we were used to. We felt we were more listened to, and that our work was more appreciated.
We work as a team and we find that we have the exact same things in common.
From being just friends to being student reps, the trust got better and we kind of trust each other more.
I can say to people ‘my voice is heard’ and then I can speak out for them or advocate for them. I felt a bit good in myself. I was proud of myself.
Friendship and trust
We all agreed that we learned a lot about ourselves from working together as reps.
We can be straight with each other. And we know each others’ reactions to it. They take on what I say and I take on what they say. So we kind of find that we do work as a team better that if I had to do it on my own, if I’d be looking for help.
Difficulties and challenges
We had to face a number of challenges, both within the class group, and also as individuals.
…don’t insult people, because at the end of the day they’re your class, and you have to be… at the end of the day you have to sit in that class for the rest of the year.
I would make sure that I have total… calmness. Before I was class rep I didn’t have patience but now I do.
I think that I was scared to talk in front of people and student rep has kind of made me come out of myself, and made me see… I’m not scared to speak up or anything like that. Not scared to give my… the way I feel about it.
We have presented at two conferences; 4th Biannual Disability Studies Conference in Lancaster University, in the UK, and at the 9th Annual Interdisciplinary Research Conference, Trinity School of Nursing, Dublin. Part of doing research is making presentations and sharing what we learn with other researchers in the field.
Conferences are not boring. You can do a lot of stuff there. You can do like photographs and stuff, or writing, or taking notes. You can be in a team and helping each other out. You get more friends.
You find out about different things, like ‘I never knew that before’ and it’s kind of a reality check. In conclusion the CCL course has embraced the adage Nothing about us without us. Photovoice has made both the doing and presenting of research findings very accessible for the CCL students, bridging the divide between them and us (Them being those who do research and us being those who have research done to them.). The CCL is one place where the them and us are becoming one as co-researchers.