In academic studies involving disabled people, all researchers are equal but some – it seems – are more equal than others.

Disabled peer researchers involved in projects have reported that their lived experience is not fully appreciated and that they sometimes felt like an inferior bolt-on – even though the projects were funded by a user-led programme.

Those feelings emerged from a study funded and written as part of the DRILL programme.

Disability Wales, members of Wales School for Social Care Research, HOLI Coproduction Research in Wales and the Wales DRILL National Advisory Group conducted interviews and focus groups with both peer researchers and academic researchers involved in six of the 35 projects DRILL has funded.

It uncovered frustration amongst disabled people around university culture and systems, alongside an unspoken assumption that academic researchers – rather than those with ‘lived experience – are the real experts.

That frustration was exacerbated because participants in the study and its authors emphasised the value of peer researchers. We found that benefits ranged from recruitment of study participants to providing reassurance for disabled interviewees and wider and more effective dissemination of the research findings.

Our conclusions reinforce previously published literature which suggests that shared experiences and language between peer researchers and participants can encourage participants to give more detailed responses.

As one peer researcher said:

“I have had people say to me at the end of an interview, ‘I’ve told you things I’ve never told anyone before.”

Yet our research makes clear that there are both practical and theoretical or linguistic barriers to a sense of genuine coproduction.

The former can include the very start of the process – with university research ethics committees nervous at the implications of involving disabled people. Meanwhile, academics agitated over the extra time allocated to providing research skills training to some peer researchers and related independent living skills; and on-going support required them during the research process.

It is reassuring that ethics committees and academics are considering the potential impact on disabled peer researchers of talking about sensitive or traumatic issues that may be factors in their own lives. However, there are ways of managing that risk – such as writing reflective diaries which were used by some of the projects interviewed

Some academics also perceived that involvement of peer researchers presented additional reputational risk to both the academic research teams and their university’s reputation.

This is tied to the need for academics to change their attitudes if a study is to be a genuine coproduction. Our report concludes:

“In order to practice research coproduction effectively, academics need to relinquish some of their power and universities need to create a working environment where decisions are made jointly and new perspectives are welcomed. In this new culture, academics and other lead organisations need to be encouraged to take risks, experiment with new ways of working and be open to learning when things go wrong.”

Despite the growing number of projects that badge themselves as coproduced, that new culture has not been embedded. The delays in ethics committee approval can be a factor in the lack of peer researcher involvement in shaping the aims and approaches of research. Their exclusion from meetings at the very beginning of the process undermines the prospect of genuine coproduction.

Some of the peer researchers we spoke to felt their contribution was under-valued by universities, potentially rendering their involvement tokenistic.

These attitudes and feelings – amongst both groups – could have their roots in language.

Some disabled people felt that the term peer researcher reinforces traditional hierarchies – with the disabled people seen as inferior to the academic researchers exploring the same issues.

One project got round this challenge by the straightforward approach of using the term co-researchers.

Overall we found much room for improvement in attempts to deliver coproduced research involving the very people whose lives are under the microscope. However, there is no doubt that such approaches both improve the quality of conclusions and benefit peer researchers.

For some peer researchers the experience improved their employability and provided additional insight or knowledge of their own health condition or impairment.

Almost inevitably, however, the quirks and – as some would say – the petty cruelties of the benefits system mean that some disabled people refused payment out of concern about accessing benefits once the project ended. For some, this anxiety was so great they requested anonymity for fear that their volunteering would lead benefit assessors to conclude they could hold down full-time jobs.

We talked above about parity of esteem between academic and peer researchers. If one group is to be unpaid such parity will never truly be achieved.

The user-led approach adopted by DRILL has helped take disability research to new levels of insight and understanding. Disabled people involved in planning and delivering those individual projects must be recognised as true equals and the problems we have identified addressed.

There can be no room for two-tier equality in disability research.

You can view the research findings here.

28th November 2019

Ruth Nortey is a researcher based at Disability Wales and a PhD student at Cardiff University. Ruth’s PhD research explores good practice around the employment of disabled people in Wales.