38% of disabled young people feel lonely most days (Sense, 2016). It almost rolls off the tongue, ‘lonely most days’ as a glib, catch-all phase. But if we properly listen to disabled young people, we will become aware of a very stark situation that needs urgent action.

In evaluative research, C.A.R.P. Collaborations has been working with disabled young people who use the Building Bridges project, a community connecting and transition service, in Monmouthshire. These young people have explained exactly what ‘lonely most days’ actually means; through reflection on what life is like now, since they have had support to maintain friendships: ‘I was existing, but now I’m living.’ Having friends means that ‘I’m not alone now. I felt incredibly alone. I started suffering from OCD, anxiety and I had my learning difficulty and I was all alone.’ And loneliness often brings low self-esteem with it: ‘Since joining Building Bridges I realised I was not so bad’.

These descriptions paint a bleak picture of transition experience. But this experience is not shared across all young people. Why is it that most (by no means all) non-disabled young people’s life trajectories lead them to find their path in the world through apprenticeships or further learning, sexual relationships, networks of friendships and a variety of options ahead of them whilst; in various small evaluation and service development assessments that C.A.R.P. Collaborations has undertaken, this blossoming of social life, or indeed participation in the adult world, does not appear to be a common experience for disabled young people. Without certain types of transition support or access to community activities young disabled people often describe themselves as ‘all alone’.

Social life and friendship are often seen as trivial; particularly within the eyes of social researchers who feel there are more weighty problems to investigate. However, re-reading these quotes, we can see that social lives and community participation are crucial; to both wellbeing and identity. But we need to know so much more in order to give the same opportunities and dreams to disabled young people that the majority of non-disabled young people currently have. The DRILL programme has enabled us to do exactly this. We are working across South East Wales to find out what are the patterns of friendship for disabled young people in transition to adulthood? What helps to maintain friendships and what are the attitudinal, organisational and environmental barriers that stop their participation in social life?

But who are the best people to do that investigation? Should a research project rely upon the C.A.R.P. staff team; all of whom are academically trained, non-disabled and aged over 45? We can empathise as individuals and analyse as academics; but to really get it right we need those young people in our research team. They are the people who know this issue, who have so accurately described the experience of friendship and explained the full implications of what ‘lonely most days’ actually means. They are also the people who will know what needs to happen to change in service design to change this bleak social reality. So the research project involves training and mentoring young disabled people to take work placements in researcher roles and work with us to explore these important questions. We are at the early stages of this peer research journey and hope our next blog opportunity will be a video account from a peer researcher colleague.

Vikki Butler is research director within Community Action in Research and Policy (C.A.R.P.) Collaborations, a social business and workers’ co-operative based in Swansea.