(Almost) every Thursday, we're going to be posting a brief blog thinking about aspects of campaigning. We’ll keep them short and snappy so you can read it in roughly two and a half minutes.
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When people talk about 'global health experts' the image that is summed up is often of someone who is 1) wearing some sort of white coat, 2) often white and 3) often male and 4) often of a certain age.
This makes sense, it's the kind of image that media pushes all the time of an 'expert' (and often with good reason!)
In comparison, affected communities are often described as 'people who have lived experience' or some other phrase, but rarely as experts. To me, this is strange. Health systems are designed to diagnose and treat people. Who has more experience of the challenges of being diagnosed and treated than people affected by a disease? Who actually knows the most about the reasons why staying on treatment can be hard? Or why people don't get diagnosed? Who, therefore, most perfectly encapsulates the definition of 'disease expert'?
Without capturing this knowledge, there are limits to what we can achieve. So, by not labelling affected communities as experts, I think we're hampering ourselves specifically because decisions are made by those who are present. If you define a group of people as experts, by definition, they have information that is useful to have in the room. If you don't, you have to rely on the good will of the organisers to get in the room, and if you're arguing to get in the room in the first place, you're starting at a disadvantage.
This is NOT to say that people with academic, clinical, or any other kinds of expertise aren't experts. I just think we'll do everyone a favour by consciously shifting to recognise that a "TB expert" is, by default, someone affected by TB, and encourage other forms of expert - who often have greater institutional influence to fall back on - qualify their form of expertise.
Thoughts? MO