Jargon busting Saying easy words
I love the way in which my colleagues and collaborators with learning disabilities help me to understand my job by simplifying the language. My colleague Richard leads the way in this. (If you haven’t met Richard, you can read about him here and here).
One of the delights of doing research with people with learning disabilities is also one of the greatest challenges. How to make sure we all know what we are talking about? For example…
Jargon alert #1
LeDeR: Learning from Lives and Deaths of People with a learning Disability and Autistic People
That’s the name of the project we started working on last autumn. It’s led by Kings College London who will do all the complicated things: looking at thousands of reports of deaths, doing the number crunching, figuring out whether (and crucially, why) people died before their time.
The job for Richard and myself (at Kingston University) is to lead the Co-Production Partnership (jargon alert #2! Co-Production Partnership? How about Working Together?). We set up a group of seven (so far) people with learning disabilities who meet once a month on Zoom.
It was clear at the first meeting that LeDeR was a confusing word that invited thoughts of Boris Johnson (no, we’re not talking about that kind of LeaDeR…) and was only understood after a fairly lengthy explanation. What to call this project then? We sat down in the office to ponder the matter. Richard knew the answer.
Well, bingo. We threw Richard’s suggestion into the group, and into other groups (we happened to give a couple of talks during the following weeks). There was a unanimous thumbs-up. Finally, we knew what we were talking about! Preventing premature deaths – that does indeed mean Staying Alive.
We later decided to expand it to Staying Alive and Well, because this work isn’t just about stopping people dying too young: it’s about making sure that everyone lives a life that is as full and healthy as possible. So now we not only have a name that tells me what I’m supposed to be thinking about, but also a theme tune that sees us dancing on Zoom whenever our brains get too frazzled from thinking and talking.
We also have a logo, courtesy of a competition we launched for people with learning disabilities. The winning entry was judged solely by the group members with learning disabilities (I didn’t get a vote).
Jargon alert #3
We’re now onto jargon alert #3. NHS England has asked us to do a couple of Deep Dives every year. It’s taken us months to come up with a good way of understanding what that means. My suggestion of Having A Closer Look was vetoed by the group, because are we really going to take a magnifying glass and actually look at something? We have settled on Finding Out More.
People with learning disabilities are the real jargon-busting experts. At our most recent Staying Alive group rmeeting, we spent a good couple of hours going over the easy-read report I’d written about the work they did for a Finding Out More question about diabetes. I was rather proud of the easy sentences I’d come up with, but quite a few of them were rejected and then improved by the group. My version…
TOP TIP: Make sure doctors and nurses know where to find accessible information.
The group’s improved version…
TOP TIP: Make sure doctors and nurses know where to find VIDEOS and EASY-READS about diabetes.
The joy that is emerging from the jargon busting (sorry: saying easy words) challenge is that it forces me to clarify (and thereby understand) what I’m actually talking about. Accessible information? What does that mean? THIS is what it means. We want videos and easy words.
Try it. I challenge you to try explaining your work to a complete novice in just one minute, using NO JARGON. For someone who needs easy-to-understand language, that might be all you’ve got, so you really need to understand what lies at the heart of your work. If you can do it, congratulations. If you’re struggling, join the club, and let’s keep working at it.
I am still struggling with this one…
Jargon alert #4
(or perhaps this was jargon alert #0, as it has been with me for years and I still haven’t managed to solve it, despite having asked many people with learning disabilities.)
In the meantime, Richard has found a jargon-free way to describe all three projects he is working on. There’s the Growing Older, Planning Ahead study we initially employed him for last year, looking at ways to support older people with learning disabilities who live at home with their families to plan ahead for the future. Then there’s our new study starting next month, on end-of-life care planning with people with learning disabilities.
So now, Richard will tell you, our week looks like this:
I’ll be Staying Alive on a Tuesday, Growing Older on a Wednesday, and Planning My Funeral on a Thursday.
Welcome to the world of a University Research Assistant.
You can follow us on twitter:
@AliveLeder (Staying Alive and Well)
@derwem (Richard Keagan-Bull)