Yesterday, the new cystic fibrosis unit at St Vincent’s Hospital was given the green light after more than a decade of delays and bureaucratic bungling. Thanks to the tireless media campaigning of people with cystic fibrosis, we are all aware of the fallout of these delays. Of course, there is the fallout on their health. But what about the fallout on the campaigners themselves?
In order to achieve their goal of a dedicated unit, people with cystic fibrosis have had to perform an uneasy dance with the media. Their dignity and eloquence touches the heart and gives them a compelling media presence. Yet when they speak, you can hear an undercurrent of unease that they have to speak in the first place. In order to achieve their goals, they have to sacrifice some of that dignity and pride and expose parts of their lives that ought to remain hidden. And they have had to allow themselves to be defined by their illness.
No doubt, they feel that the end justifies the means. But they shouldn’t have had to do this. They shouldn’t have to be describing the colour of their mucus to Joe Duffy on Liveline. This is another way that they have been let down by the Government and the Health system. Where are the HSE spokespeople? As usual, they are hiding behind a wall of paper. No fear that they’ll put themselves on the line the way people with cystic fibrosis have.
The media has done great work in highlighting the issue. But it also bears a responsibility to these campaigners. The media can’t resist heroising people (see my previous blog post, http://bit.ly/9gsod9), because it’s more newsworthy. Even the language they use ‘cystic fibrosis sufferers,’ is problematic. Cystic fibrosis does cause a lot of suffering, but people who have it have learned to adapt and live full, ordinary lives.
It’s about time media coverage reflected the reality of life with cystic fibrosis. Hopefully with the announcement of the new unit, the media will let people with cystic fibrosis get on with the business of breathing, If they do have to give the Government the nudge, that the media will give a more rounded portrait of the cystic fibrosis campaigners.