Agnes (Aggie) Bezzina is a Senior Lecturer in Social Work with Adults at the University of Bristol. She has 18 years’ experience of social work practice, research and education in mental health and disability. Her research highlights the wealth of cultural, historical, social and illness-specific service-user knowledge in order to educate health-care and social-care practitioners. Natasha Sutton Williams spoke to her about the joys and challenges of leading the D4D workstream Performing Inclusion and Community.
As part of the D4D project, Aggie and her team have been exploring ideas on community, inclusion, belonging and marginalisation with learning disability participants. Collaborating with the Misfits Theatre Company in Bristol, they have gathered stories on how these ideas are experienced in everyday life by participants. These concepts have been translated into training videos for social work and social care practitioners. One of the project’s major goals is that by creating a platform for people with learning disabilities to express their understanding of community, these insights can positively influence the decision-makers in their lives. Aggie told me:
“We coordinated creative workshops with the Misfits where through playing games we introduced different ideas on what community means, and what comes to mind when they think of community. We did things like make collages with magazine cut-outs and created pieces based on questions like ‘What do I have in common with others?’ We would play games where if you liked dogs everyone would gather together, and you could create a group if you absolutely dislike dogs. We began creatively exploring these notions of community, and focused on topics that actually meant something to them. Certain themes started emerging such as safety and security. For example, being with other people they can identify with gives them a sense of security and safety. But of course, they also want to be involved in activities with other people too.”
Through curating these ideas, Aggie worked with the Misfits to create videos illustrating their experiences of inclusion and marginalisation.
“One of the videos is based on the question ‘Where do I feel safe?’ Another video focuses on the question ‘Will there be disabled people like me in the future?‘ as well as ‘What will social workers be like in future?‘ These questions came from the Misfits themselves. Some of them said: ‘I don’t feel like I belong in the community because I don’t see people like me. I go out and never see people like me. With genetic screening there’s not going to be people like me anymore’.”
For many years, Aggie has trained social workers to work with people with learning disability. She states that one of the best ways trainees can learn is through practical on-the-ground interaction with learning disabled people themselves. She told me:
“One of the most powerful examples of this was with a student who had engagement problems with all of the lecturers. He always used to sit at the back and rarely participate. I remember thinking that if one of the learning-disabled participants manages to engage him then hats off to them. Sure enough, they did not stop until they physically went and sat next to him and started chatting. They had a conversation with this student about what is important to them. It’s difficult to explain the value of that. There is something in actually engaging with someone who you may perceive as other, but suddenly you are sat in front of them and they are asking you what is important to you? What did you eat yesterday? What are you doing tonight? Suddenly you have to think about conversing with them; you can’t be using the academic terms you use in your essays as a social worker. Suddenly you are challenged to communicate in a different way, but in a way that is meaningful to the person in front of you. I think it’s very under-utilized. Students can listen to a lecture from me about learning disability, but the value of hearing it from the people themselves and interacting with them far surpasses anything I can offer in a lecture.”
Aggie’s main takeaway is “who better to learn from, and communicate with, than the people themselves?” It’s a humanising experience for all those involved. This includes talking about everything from going to the supermarket to having safe sex.
“It’s so easy for us professionals to discuss how people with learning disability should consider whether they should have children or not, because will they be able to take care of them? Would their offspring have a learning disability like them? The moment you have a person with learning disability in front of you and you are discussing this with them, your language and the way you think about it completely changes because you realise that you’re talking about a human being.
“One of the things the Misfits talked about in our workshops is how people don’t talk to them about sex, and how, if you don’t educate me about sex, then I will not know what I should be doing and what I shouldn’t be doing, and what the consequences are of what I choose to do. How people do not see them as sexual beings or choose not to; how people think they don’t have the capacity to have romantic relationships. They talk a lot about that.
“There are two members of the Misfits who took pictures of each other during a D4D creative photography workshop, and shared them with the group. Through this sharing we discovered they had been together for seventeen years. Wow. That’s longer than a lot of relationships! It came out that they lived in the same house, but there were some care workers who let them go into each other’s rooms, and discussed with them what they needed to know about sex. It’s so different to having professionals theoretically discuss whether a person with a learning disability should be allowed to have a sexual relationship. There in no difference in the capacity to love.”
There are always ethical questions to consider when academic research is taking place. So I asked how have ethical concerns played a part in her research? Aggie explained to me:
“Research ethics and the formal aspects of research tend to be very limiting for learning disability studies because of the fear of doing no harm. Very often we tend to be so protective of the people with learning disability that the possibility of doing harm closes opportunities rather than opens them. In our efforts, we end up doing the harm of not listening and closing up completely to a section of society who we have decided are much more vulnerable than us and who we have decided need to be protected.”
As the D4D project comes to an end after five years of research, Aggie was keen to share her insight with DAO readers:
“As research professionals, we do not give enough value to people’s lived experience; we have a hierarchy of knowledge. Obviously, peer reviewed journal articles are very high up in the hierarchy of knowledge, but what do these articles mean to the people who have experienced social work services or been through the mental health system and had an assessment done to them. Where does this lived experience come in? In the hierarchy of knowledge, how much do we value what they have to say?
“When I talk about service user involvement, I’m specifically referring to listening to the voices of people who have used services, and respecting their knowledge as valid knowledge which should inform our practice and future services. This is where the transformation happens: when you show them respect through offering them a presence at the decision-making table.”