In the co-production in health scene in which I have worked for about 15 years now, we often remind health professionals to avoid using jargon and abbreviations. People usually agree with the sentiment, although the practice still remains in many places. The alternative that people often speak about is to use ‘plain language’ – a form of English that keeps its vocabulary limited and structure simple with the aim of including as many people as possible, especially patients or people with lived experience. The challenge with this approach is it requires making assumptions about what other people will or could understand. A recent experience taking part in a research project* got me thinking about the assumptions that can underlie these approaches, and whether deciding for others what they can understand is ever truly inclusive.
Plain language can include
The plain language movement argues that public communications should be written in language which at least most of us can understand. So if we’re applying for welfare benefits or paying a congestion charge – we all have a right to understand what is required of us. And while we might be able to ask someone, saying “I don’t know what that means” requires a level of confidence that not everyone has. When I started working with public sector organisations as someone sharing my lived experience, I felt excluded by the language. Sometimes I still do.
Plain language can exclude
When working with people with lived experience, sometimes a less positive assumption can creep in – that people with lived experience won’t be able to understand. I’ve experienced this in organisations where I wasn’t able to speak or write as I would like to match a perceived need of our audiences. This was a challenging feeling for me. As someone growing up in the north with southern parents, I was often told that the way I spoke was wrong. And that’s discomfort coming from a privileged position. I imagine this pales in comparison to, for example, someone speaking English as a second (or third or fourth) language, or whose brain structures their speech in a less common way.
Assumptions from a good place are still assumptions
To guess what others can or can’t understand, we need to make assumptions about them. As a disabled person, I sometimes find myself being treated as if I have a limited capacity for understanding. But I am also an educated person with a quick brain. We all have many aspects to ourselves – I am a Dad, in my early 40s, white, disabled, a partner, a son … When we communicate with others, we tend to take some of those characteristics as being more important than others. There’s a really useful term from sociology – ‘master status’ that describes the characteristics that others take as being more important than others. My disability is often invisible, but sometimes I use a wheelchair or mobility scooter, and it then becomes highly visible. I notice that when my disability becomes visible, people often treat me very differently – it becomes my master status.
Being inclusive does not need to be limiting
This brings me to the research project I mentioned at the beginning. I took part in story circles, where participants take it in turns to share a short story on a theme, with others just listening as everyone takes their turn. I joined part way through, and before attending my first story circle, I was sent a summary of the last one. First I read a summary of themes from the interesting and often moving stories people had shared. When I got to the end of that, I was surprised to see a section on theory that related to these stories. I’m not used to seeing this in lived experience work! I even asked the researcher, Emilie, whether this is what went out to everybody. It was wonderfully refreshing to be in an environment where people with lived experience were expected to be able to understand and want to engage with theory to the same extent as academics involved.
There were some specifics that made this use of theory more inclusive than in some contexts. It was explained in approachable, everyday language and it wasn’t assumed that everyone would know what it meant. But in my experience, that would also be a useful approach in professional circles.
Sharing with, not deciding for
Maybe you noticed that I used some technical language when I talked about the ‘master status’. And hopefully I managed to explain it in a way that was understandable for someone who hasn’t studied sociology. Sometimes we have new words because they describe something that the words we had before didn’t do very well.
I think there’s a huge difference between unthinkingly using exclusive technical language, and avoiding using anything that we think might be unfamiliar to others. If we present new ideas as optional extras and offer extra support with understanding where needed, there doesn’t seem to me to be any reason to me not to learn and share ideas together regardless of background or status. If we want to be inclusive we can achieve this better through sharing and exploring together than deciding for others what works for them.
* This piece was inspired by my involvement in the Creative Health Boards project, a research project exploring how arts culture and other creative activities can be embedded In local health and care systems. It is a collaboration between Sheffield Hallam University, University of Sheffield, darts, Cast, Heritage Doncaster and Doncaster’s Health Determinants Research Collaboration (HDRC).
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