This photo* sums up why I do what I do, and why many people think I sound like a broken record, with a vocabulary of a mere seven words. Specifically, these seven words: ‘Have you spoken to people with diabetes?’
Because so often, the answer is ‘No’. Or ‘No – we’ll be doing that after we have had some meetings.‘ Or ‘Yes – we spoke to you‘ at which point I remind them that I pointed out when they did indeed speak to me that they should find other people with diabetes to speak with. Because I am but one person and speak for no one other than me. (Or, perhaps, another woman in her 40s who loves Nutella, boots, coffee, lives in inner-Melbourne, waves her hands around madly while speaking reallyreallyreallyreally fast, can recite Marx Bros movies from start to end, has what some would call an irrational fear of birds (and butterflies), can sing (badly) pretty much any song from the 1980s, has over 25 striped t-shirts in her cupboard and is battling an eleven year old daughter who has decided that she too loves stripes and wants to borrow all her mother’s clothes.)
Most people are not like that. (Fortunately.)
Anyway, this picture also demonstrates that those who have the privilege of designing services, activities, programs, settings for people with diabetes often miss the point – perhaps not by much, but nonetheless, they miss it. It’s usually because they forgot to ask us, or asked as too late, or didn’t keep coming back and asking and checking in. And then, when we don’t use what they design, we are branded ‘non-compliant’ or ‘disengaged‘ or ‘not interested in our health’, when the truth of the matter is that their design (without our input) just doesn’t fit our needs.
I have given so many talks and written so many pieces about this. But perhaps all I need is this on a t-shirt, tattooed to my arm (forehead?) and on the back of my business cards. Don’t design before speaking to the user. It’s actually really easy!
(*I don’t know the source of this photo, but if anyone does, please let me know so I can credit appropriately.)