Enabling The Voice of Those Most Affected by Ill Health

In an attempt to blend ‘symbolic’ communication with ‘organic’ communication we structured the session like a live talk show, allowing our ‘in-studio’ guests panellists to respond to the radio audience as they attempt to ‘call-in’.

The session was co-ordinated by Healthlink Worldwide. In an attempt to blend ‘symbolic’ communication with ‘organic’ communication we structured the session like a live talk show, allowing our ‘in-studio’ guests panellists to respond to the radio audience as they attempt to ‘call-in’. Fundamental to this conceit was the distribution of phones for the audience to make their ‘calls’ or access the station. However, Healthlink Worldwide contrived to have the challenge of contacting the station and the experts happily ensconced in there reflect the reality as far as possible but more on this in a second. 

The session began happily enough. The audience was advised that because WCCD FM had been scooped by Oprah, we wouldn’t be able feature Madonna and the perils of African adoption on the Afternoon Drive Time. Instead we would talk about the value and constraints to voice in health communications. We then went to a little ‘voxpox’ where a roving reporter- yours truly- asked a few audience members what they thought was the value and what they felt might the constraints to voice in healthcare and in communications in particular. The answers to justify the use of voice by the most affected were all along the lines of ‘the person who wears the shoe knows where it pinches- so if you want to make a difference listen to them’. (A quote from Dr Indu Capoor of CHETNA who was one of the panellists.) Regarding the challenges there was some discussion on the paradigm shift that was required by development and healthcare providers and a sense also that we might overestimate people’s preparedness or capability to speak.

There were lots of fascinating examples of voice making a real impact at a policy level and the level of treatment protocol and even – to health outcomes in some instances. (These were duly described for the rapporteur and the conference’s advocacy agenda.) However, what was most interesting for me were the discussions around constraints. A number of issues were raised here. One was how do you expect people to speak of change when they are not in a position to envisage or relate to a society transformed – in essence, can we expect people to raise above their culture? There were also questions about the challenges of listening because as development facilitators we have consider carefully who has more responsibility- those who speak to be heard or those who ask to understand? Then there are the various operational challenges. As Bernie Trude of Healthlink said, there is more space given for experts and managers when it comes to planning and delivering and this means there are less resources to engage those most affected. And this process of engagement cannot be under-estimated, it is time-consuming and resource-intensive.

But perhaps most intriguing was reflecting on the actual process of the session. Audience members were given paper simulations of mobile phones to raise when they had a question, as a way of mimicking the act of calling the station. Each phone had a different capacity- some had no credit, some had no network access and some were multiuser and, of course, some callers had no phone at all. However, one the questions started the audience was pretty quick to invent excuses to circumvent these constraints and make their contribution. For instance, one caller whose ‘phone’ indicated that he couldn’t speak the language reached for one that would allow him to once he made his contribution said ‘that was the fastest english language course I ever took’. In effect, as people with means and access the participants of the session cheated quite a lot. Does this mean that we didn’t take the operational challenges seriously enough or that we find them so compelling we couldn’t help but share our experiences?

On a more positive note, there was a clear consensus which recognised that development is fundamentally about issues of power and that health and disease are largely socially determined.

Healthlink

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